Volume II Issue i

The Body: From Part to Whole

Fully Engaged Deliberation – the Evolution of Penn Bioethics Journal Welcome to Volume II, Issue 1, of the Penn Bioethics Journal. I’m proud to announce a number of exciting developments with PBJ. But first, a quick look back: The Penn Bioethics Journal has come a long way in the last two years. In Spring of 2004, a dozen undergraduates from Penn gathered to discuss plans for hosting the 8th National Undergraduate Bioethics Conference, scheduled for April, 2005. Learning from previous conferences, and speaking with faculty advisors, we realized the value in spotlighting student research in bioethics. So we planned on inviting a few students to present at the conference.

But somehow a simple invitation just did not seem fitting. As an advisor to our undergraduate group, Professor Glenn McGee always encouraged, even required, we dream big. An “invitation to present” sounded bland and boring.

And a few members of the undergraduate planning group wanted to ensure we produced something lasting from the conference. So we decided to say we were starting a journal!

Internally, we figured we might actually be able to pull it off; at least publish some group of writing in connection with the conference. But what you are reading now is so much more.

On April 1, PBJ will mark the anniversary of its first issue. We have received submissions from China, Romania, Australia, Israel, and Canada. Schools across the U.S. – large and small, public and private — also understand the important role of the undergraduate in bioethics scholarship. We do empirical research, synthesize arguments and explore complex issues from across disciplines.

Bioethics at the undergraduate level is vibrant and visible.

The greatest value of PBJ, I venture to argue, has nothing to do with the published product. Students from around the world work with eminent mentors to research and write their articles. And students at Penn, who have come from all four undergraduate schools, gather first in small clusters, and then as an entire group, to read and discuss each submission. Of course, we look toward our faculty mentors for guidance and suggestions, but ultimately, PBJ is a product created by, and for, the undergraduate.

One Saturday morning, two freshman, a sophomore, two juniors and a senior gathered in the student union to discuss, and make an initial recommendation, on a submission critiquing an innovative medical technology.

The conversation covered the basics of form, structure and clarity. But then it wandered: one student asked what exactly was meant by “theory of humanity” while another responded, explaining the philosophical theories of posthumanism and neoconservative views on enhancement.

The moment quickly faded but the value remained: students were teaching each other, academically engaged outside the classroom.

Penn Bioethics Journal Vol. II, Issue 1 (2006)

The next Wednesday, around ten pm, 25 students in the basement of an academic building evaluated the same paper. One group advocated for acceptance of the submission while another group argued against it. Some time later, after powerpoint presentations and forthright discussion, a consensus was reached. The editorial process engenders constructive engagement and deliberation.

With this second issue I am proud to share a number of exciting developments: In addition to our popular online version, PBJ now has available, on a limited basis, printed copies of the journal, free of charge, to students and schools.

Chava Cogan, a member of the PBJ editorial board, is responsible for the catchy cover image for this issue. For more of her work, check out the back cover of the journal and the PBJ website.

Volume II, Issue 2 of PBJ will be called Bioethics Without Borders. More information on the topic and deadline is on page 42.

PBJ, in partnership with Penn’s Center for Undergraduate Research and Fellowships (CURF), will be recognizing two articles in each issue with a cash prize.

Beginning with Volume II, Issue 2, the authors of the two most outstanding articles will be awarded $300 and $100, respectively, in recognition of their work. This prize, available to all authors regardless of institutional affiliation, marks the first, and only, cash prize available for undergraduate contributions in bioethics. More information on this exciting opportunity is available on page 2.

Selected authors from this issue and the next will be invited to participate in the university-wide symposium celebrating the opening of the David B. Weigle Information Commons at the Van Pelt-Dietrich Library on campus.

These talks, following the Dean’s presentation, will explain the research behind the students’ published articles. They will be on April 11, open and advertised to the University community. Look for more information online.

With a bit of nostalgia, and a lot of excitement, the Editorial Board met to elect a new executive committee. I am ecstatic at the work we’ve done so far, and I am confident that the incoming Executive Editor and Publisher, College Junior Jennifer Rha, will continue the mission of Penn Bioethics Journal: to strengthen the undergraduate voice in bioethics through research, deliberation and publication.

Andrew Rosenthal University of Pennsylvania, C’06 Founder, Executive Editor and Publisher Penn Bioethics Journal

www.bioethicsjournal.com

pbj 1

Award for Excellence in Bioethics Writing The Penn Bioethics Journal is pleased to announce the launch of two writing awards for outstanding submissions.

The Outstanding Contribution to Undergraduate Bioethics award, administered in conjunction with the Center For Undergraduate Research and Fellowships (CURF) at Penn, has been established to recognize outstanding undergraduate writing in bioethics. All undergraduates with articles published in Penn Bioethics Journal are considered for the prize. Two outstanding articles in the journal will be recognized with a first place prize, of $300, and a second place prize, of $100, respectively. The recognitions will be awarded in conjunction with the publication of each issue.

All submissions--those that meet either the early or regular deadlines--will be considered in the selection. Executive members of the PBJ editorial board and the PBJ faculty advisors, in partnership with CURF, will select the winners.

A deep understanding of the issues, insightful exploration and writing style are just some of the qualities by which prospective articles will be judged. Submissions are considered without regard to home institution. The first recipients of the award will be announced in April.

pbj 2

www.bioethicsjournal.com

Penn Bioethics Journal Vol. II, Issue 1 (2006)

inside this issue...

Exclusive PBJ Interviews

04 07

with Francis Delmonico, MD, of OPTN/UNOS with David J. Undis of LifeSharers

Feature Articles

09 13 16 20 23 27 31 35 38

Psychedelic Psychotherapy: The Ethics of Medicine for the Soul BRIAN ANDERSON, University of Pennsylvania Ethical Considerations on Organ Transplantation in China CHANGMIN JIANG, Peking University Health Science Center Selling with Dignity: Organ Selling and the Safeguarding of Human Dignity JULIA JOSEPH, University of Toronto Critical Objections to Michael Steinberg’s Opt-In System for Kidney Transplantation MATTHEW KELLY, Brown University The Medicated Self: Implications of Prozac on Selfhood, Embodiment and Identity CARA RABIN, University of Pennsylvania Transplantation of Ovarian Tissue ALIX ROGERS, University of Pennsylvania Assessing the Ethicality of Pre-implantation Genetic Diagnosis beyond the Discourse of Eugenics FARAZ SIDDIQUI, University of Toronto Emergency Contraception: Balancing a patient’s right to medication with a pharmacist’s right of conscientious objection HANNAH SHACTER, University of Pennsylvania Person in PVS: An Oxymoronic Bioethical Issue?

NOAH T. SUGERMAN, University Of Pennsylvania

Penn Bioethics Journal Vol. II, Issue 1 (2006)

www.bioethicsjournal.com

pbj 3

The Body: From Part to Whole

Interview with Francis Delmonico, MD: Director of Renal Transplant at Massachusetts General Hospital and President of the Organ Transplantation Procurement Network Interviewers: Ian Barrett, Rachel Han, Justin Masterman, Andrew Rosenthal, and Jules Shen Transcribers: Sheri Halpern, Rachel Han, and Jules Shen 16 January 2006, University of Pennsylvania About Francis Delmonico and OPTN/UNOS Francis Delmonico, MD, is the Director of Renal Transplantation at Massachusetts General Hospital and a professor of surgery at Harvard Medical School, where he is active in organ donation research. He is the President of the Board of Directors for the Organ Procurement and Transplantation Network (OPTN)/ the United Network for Organ Sharing (UNOS).

Together as a federally mandated public-private partnership, OPTN/UNOS implements, regulates, and collects data on the United States’ system of organ allocation, including 256 transplant centers and 58 organ procurement organizations nationwide. Since 1986, Dr. Delmonico has been a member of numerous OPTN/UNOS committees, including ethics, scientific advisory, living organ donor, ad hoc foreign nations, and kidney and pancreas transplantation. With his extensive knowledge and experience, he is chair of the ethics committee of the (International) Transplantation Society.

As councilor of the American Society of Transplant Surgeons, Delmonico has convened national meetings and conferences for various classes of donation, including living, non-directed and expanded criteria. He also serves as medical director of the New England Organ Bank. He joined the Transplantation Unit at Massachusetts General in 1980.

Earlier in his career, Dr. Delmonico was a United States Navy Surgeon, with positions at Walter Reed Medical Center, the Uniformed Services University School of Medicine, and on the USS Independence.

In addition, he has lectured and taught in cities throughout the North America, Europe, China, and Australia. Delmonico holds authorship or coauthorship for more than 150 articles in publications such as the Journal of the American Medical Association, the New England Journal of Medicine, and is on the editorial board of four nationally prominent transplantation journals. He holds his medical degree from George Washington University.

PBJ: Could you explain how you made the transition from clinical medicine to policy advising? What do you see your role as outside of the surgery room?

Delmonico: I’m the president of the Organ Transplantation Procurement Network, the OPTN, which is a federally mandated, legislated oversight [body] of organ transplantation in this country. The contract for the OPTN

pbj 4

is administered by the United Network for Organ Sharing, so I am the president of the OPTN and UNOS simultaneously. The difference between the OPTN and UNOS is that the board of trustees of the OPTN is constituted by all of the board of the UNOS organization but in addition has two nonvoting members from the Division of Transplantation.

PBJ: Is it correct to assume that this relationship between UNOS and OPTN has been this way since OPTN, or [rather] UNOS, was chartered?

Delmonico: In 1984, Congress passed the National Organ Transplant Act (NOTA) that authorized the Secretary of the U.S. Department of Health and Human Services (HHS) to establish the OPTN in the private sector. In 1986, the United Network for Organ Sharing (UNOS) was awarded a contract by HHS to establish and operate the OPTN. UNOS continues to operate the OPTN under the Health Resources and Services Administration (HRSA).

The UNOS Board of Directors, together with two nonvoting HRSA representatives, functions as the OPTN Board of Directors for the formulation of national organ transplantation policies. The OPTN Board is a diverse group representing all elements of the transplant community. The five components developed by the OPTN are (1) increasing the number of transplants; (2) oversight of live organ transplantation; (3) applying the concept of net benefit to the kidney allocation system; (4) addressing the disparities in access to transplantation; and (5) the collection and validation of data that fulfills three objectives: to develop policy, to distribute organs, and to assess performance of centers.

PBJ: What are the greatest strengths or safeguards built into the current UNOS system?

Delmonico: The greatest strength of the system is the voluntary effort of the transplant community. The chairs and members of all the various committees that work through the OPTN are all [dependant on] volunteer effort.

In part, what it’s done well is to assess, in a peer review fashion, performance by outcome…graft survival, patient survival. The Membership and Professional

www.bioethicsjournal.com

Penn Bioethics Journal Vol. II, Issue 1 (2006)

Interview with Francis Delmonico, MD

Standards Committee receives all of the data, and that data is quite excellent. Whether the graft is functioning and whether the patient is alive are analyzed by a separate, contracted organization, the Scientific Registry of Transplant Recipients. The SRTR works with UNOS in furnishing [data] to the OPTN and UNOS, to its Membership and Professional Standards Committee, [so that] an analysis about comes for each of the centers.The MPSC reviews those data. If there is a center that does not fulfill the criteria for graft survival as statistically analyzed by the SRTR, then a review of the center is made. Members of the MPSC review the practices of the center: their protocols, their resources, and their staff, in order to make a recommendation of a corrective action plan that then has to be fulfilled by the center. That’s an excellent function of the transplant community by volunteer effort, unmatched in any other field of medicine in this country. It’s simply outstanding.

PBJ: What can we do to improve the organ transplant system?

Delmonico: We need to reassess what we’ve been chartered and legislated to do. We are not the police. If centers do not bring to attention to certain aspects in the media up to now, [they] have not [responsibly assessed] whether a center is turning down organs or what their presence or absence may be in conducting the practice of transplantation in a particular center.

PBJ: How can we make things better?

Delmonico: We have a task force convened to address those particular items, and by the direction of the Board, we will have a report as to how we can make improvements of the particular issues: assessment of turndowns, assessment of death on the list, and the presence of a particular surgeon on-site at a given institution. I anticipate that we will have this responsibility in the near future, and the MPSC will go at that.

PBJ: Are there any areas of legislation that you’d like to change, as it relates to UNOS? Delmonico: There’s a drafted legislation that is to be forthcoming pertaining to paired live organ donation. It would be an amendment to the 1984 National Organ Transplantation Act. That act prohibits the buying and selling of organs. [It is important to note] the way that the language of the act is constructed: it talks about the transplantation of an organ on the basis of a “valuable consideration.” As far as the drafters of the legislation in 1984 – specifically Al Gore – are concerned, the intent of the act was to prohibit “valuable consideration” as a monetary compensation or payment for the organ.

Penn Bioethics Journal Vol. II, Issue 1 (2006)

I’d like to see the legislation address the opportunity of paired donation in this country, and the oversight of that practice be accomplished by the OPTN, where currently there is a restriction on our doing so because of the interpretation of the 1984 NOTA. That would make the simultaneous transplantation of kidneys between donors who are incompatible with their recipients and recipients who are compatible with their recipients not a designation of a “valuable consideration.”

I wish to see paired donation flourish in the United States because it isn’t a matter someone selling their kidney; it’s a matter of simultaneously wishing to help another individual and being unable to do so because of biology.

We’ve done a number of these in New England, and there have been several places in the country now; for example, at Hopkins in Baltimore, which have embarked upon it. What I wish to see, however, is anational system, because it could be only through a national system that the opportunity is best realized. You have to try and identify a number of these incompatible pairs to then hopefully find compatible donors and recipients in that system.

PBJ: One concern is that there shouldn’t be a need in some cases for altruistic living organ donation, because there are so many organs from cadaveric sources that aren’t used each year in this country.

What do you think about the idea of an opt-out system, where donation is assumed, like in Europe, versus the one we use in the States?

Delmonico: Now I’m going to speak personally for a moment. II think it’s a societal responsibility that upon someone’s death, his organs become available, and his tissues become available for transplantation. However, our consent rate in this country is still in the range of 50%. We’ve done very well in assessing what our donor potential is around the country; we have about 12-13,000 brain-dead donors each year available that would be suitable for organ donation, and yet there are now only about 7,000 annually.

HHS (under Secretar y Tommy Thompson’s leadership) has done a great job in a collaborative of best practices in having unprecedented increases in deceased donation over the course of the last two years, (since November of 2003). Every month since November of 2003, when one assesses the number of donors that have been realized in the United States, there has been an increase. That is a great contribution that has come about from the collaborative, but we still are only at about a 50% consent rate.

PBJ: Is the opt-out system feasible? Would it be accepted?

Delmonico: I do not believe opt-out [donation], meaning that you would be an organ donor unless someone speaks

www.bioethicsjournal.com

pbj 5

up and says you’re not, would be accepted by our society.

For example, in my own personal experience, when we tried to develop some legislation in Rhode Island, the civil liberties group came upon the legislators and was very vocal in its opposition to it.

So, we are trying another tactic, and the tactic is to say that when you are going to the motor vehicle registry, you can indicate by that donor card your intent that would be nationally accessible by any state registry.

It’s my own personal view that it would be quite satisfactory.

Nevertheless, I don’t believe it would be found to be acceptable by a majority of our society and there would be strong opposition from certain circles. Thus, the tactic is to indicate, from those who are willing, and exercise one’s rights as a donor by indicating your intent from the donor card.

PBJ: Should people who have already become kidney donors be given preference?

Delmonico: We know now of about 100 individuals who were a kidney donor in their lifetime and now themselves need a transplant. That is a very small number, [but] society should give them some priority. It’s a very important to think about these issues.

PBJ: How [has] the influence of a growing organ black market affected your role as a transplant surgeon?

Delmonico: In countries such as Pakistan, Turkey, in certain locations of South America, and in the Philippines, there are markets for organs where affluent people can go there and within weeks obtain an organ sold by a vendor and brokered by individuals internationally through the Internet.

There’s one illustrative case that I can cite as an example.

This was published in the New York Times about a year ago. A woman from Brooklyn went to Durban, South Africa, and the transplant was accomplished from a vendor who had come from Brazil. And the broker was in Tel Aviv. These market transplants are occurring. They’re illegal, because they violate the dignity of the human person.

These markets that sell kidneys are indistinguishable from the markets that exist to sell children and women.

pbj 6

As a society, collectively, internationally, as a people, and as a human race, it is not for us to have members of our society have to sell themselves, in any fashion. The World Health Organization is opposed to it as well, and I’m hopeful that it will take a strong stance against what has become known as “transplant tourism.”

I make no judgment about the woman from Brooklyn.

She is in desperate need and we need to help her by finding a kidney for her, but I don’t believe that the solution is to have somebody from Brazil go to South Africa and sell a part of himself. As a transplant surgeon, I find it abhorrent.

I am aware of patients who have gone to a variety of these countries and gotten their organs and come home, and we care for them. Again, it’s not my judgment to say that somebody ought not to do this as an individual, but I do believe we ought not endorse it as a public policy.

Dr. [Igal] Kam in Denver was Bob Hickey’s surgeon.

With regard to the right of refusal, and the surgeon’s prerogative in determining what is ethically appropriate, you said that it is another matter; the surgeon said, in essence, “I’m never going to do this again. I’m not going to participate in this.”

It isn’t for me to tell people how to develop relationships. The transplant center’s responsibility is to know of how those relationships developed. The transplant surgeon has to make a medical judgment as to whether or not they will perform the transplant.

We’ve had some donors come along that were within the family, the determination was made, and they were revealing about how they were coerced. You wouldn’t expect me to go ahead with the transplant under that circumstance either.

PBJ: Do you have any concluding words for our readers?

Delmonico: I don’t pretend to have all the answers. I’m just simply trying to give you what has been [my] experience and be very candid. You’ve got to continually reassess what you’re doing and how you can make things better, and that’s one of things that I wanted very much to stress as president of the organization. No one is perfect, but as we judge our mandate and agenda, please allow for us to try and make things better.

www.bioethicsjournal.com

Penn Bioethics Journal Vol. II, Issue 1 (2006)

The Body: From Part to Whole

Interview with David J. Undis: The Founder and Executive Director of LifeSharers Interviewers and Transcribers: Sheri Halpern, Lauren Hurwitz, Justin Masterman, and Alix Rogers 18 January 2006, University of Pennsylvania About David J. Undis and LifeSharers David J. Undis is the Founder and Executive Director of LifeSharers. Originally from Nashville, Tennessee, and holding a BA from Macalester College and an MBA from New York University, Undis launched LifeSharers in 2002 following a 25-year career in the insurance industry. LifeSharers is a voluntary network of organ donors, whereby members agree to donate their organs first to other members of the LifeSharers network, and then to the general public if a suitable match is not found. By restricting their gifts according to this model, members of LifeSharers create an incentive for others to donate their organs. More information about LifeSharers is available at www.lifesharers.org.

PBJ: Have you found that the public has been open to your attempts to gather support?

Undis: Most people’s immediate reaction when they hear what we are doing is, “Gee, that makes a lot of sense; that’s really fair.”

PBJ: What has it been like navigating the medical realm as someone with a different background?

Undis: We have not gotten a whole lot of support from the medical community yet, but that is changing.

PBJ: What motivated you to start LifeSharers?

PBJ: Why do you feel that the medical community hasn’t gotten on board?

Undis: I kept reading about how many people were dying while waiting to get transplants and how few people were organ donors. It just occurred to me that if you had to be a registered organ donor to get a transplant, then everyone would register and we would save lots of lives.

I did some research and found that other people had thought of this idea, but no one had done anything with it. So, I decided that I would. This idea has been around for at least 15 years, and the Internet really makes it doable.

Undis: I do not really know. In the first place, it is hard for me to attract their attention. I have not run into a lot of opposition from the medical community; rather, it is more a question of not being successful in getting much attention from them. I see all the new members come in and every once in a while I see someone with an M.D. behind their name. I do not want to leave you with the impression that we’re getting any opposition from that community.

PBJ: How does LifeSharers work?

PBJ: To this day, no LifeSharers members have become eligible donors. How do you plan on approaching that first case?

Undis: LifeSharers is an attempt to save lives by convincing more people to donate their organs when they die. Our plan is to give people a good reason to donate. When we came along, the only reason to donate organs was the chance to help someone else. Unfortunately, for too many people, that’s not a good enough reason. So, we are giving people a better reason, or at least another reason. There is a chance to save their own lives by agreeing to donate their organs when they die.

PBJ: It seems that to have a real impact on the organ donation shortage, you will need an extremely large network of members.

How do you plan on attracting more members to LifeSharers?

Undis: We are now at 3,731. I spend a lot of my time doing press outreach: writing to reporters who have written on the subject of organ donation; writing TV stations that run stories; writing op-ed pieces and trying to get them published; and giving speeches.

Penn Bioethics Journal Vol. II, Issue 1 (2006)

Undis: The key fact is that what we are doing is legal in all fifty states and the District of Columbia under state and federal law. So, I have every expectation that when one of our members finally does become an organ donor, the transplant people in the hospital where it happens will follow the law and the wishes of our member. Keep in mind that these transplant personnel always follow the wishes of the donor’s next of kin. There are now fortythree states where registering as an organ donor is legally binding. By law, family cannot override that decision.

There is not a single instance that I know of or a single state where that law has ever been enforced. No one wants to deal with a grieving family. No one has to deal with people who die when that grieving family overturns their loved one’s wishes to donate their organs.

My point here is that if people always follow the wishes of the family when the law is on their side, why would I all of a sudden think that these people are going

www.bioethicsjournal.com

pbj 7

to start opposing families when the law is not on their side? Imagine the negative publicity that the organ transplant industry is going to get if the American public finds out that it tried to stop an organ donor from exercising his legal right to give his organs to another organ donor so they could take them and give them to someone who had not donated organs. [The organ transplant industry] does not want that publicity.

PBJ: What happens if the next of kin opposes the individual’s decision?

Undis: There is not a whole lot that we can do about it.

Having said that, however, I think that is relatively unlikely.

There is a large number of members whose family members are also members. We get a lot of memberships in bunches. A man will sign up, his wife will sign up, and they’ll sign up their three kids. So if you’re a member, and two or three of your family members are also members, it’s not likely at all that they’re going to override your wishes. We’re having a positive impact in terms of reducing the chances those family members are going to override organ donation wishes.

PBJ: Is LifeSharers a cohesive network? Do members of the network have contact with each other?

Undis: I would not say that LifeSharers is a cohesive network. We have members in all 50 states; people who have gone to our website and signed up, read about us in newspapers, or saw a story about us on TV. Most of these people don’t know each other. We also encourage and we’ve had pretty good success recruiting new members by asking our members to let their friends know, using viral marketing. LifeSharers is not a national organization that has meetings where people get to know one another.

PBJ: Do people know where their organs go after donation?

Undis: If the person wants it to go to Richard Jones in Raleigh, North Carolina, to that extent, there is an opportunity for people to know where their organs go.

What happens after that is anyone’s guess.

pbj 8

PBJ: How do you safeguard against individuals who might be abusing the system? Would you ideally like to require some sort of medical criteria?

Undis: No, we do not want to discriminate against sick people. Imagine the opposition we would generate if we excluded everyone who needed an organ. Also, keep in mind that a whole lot of people who need organs can be organ donors. You can have a bad heart, but have a perfectly good kidney or perfectly good lungs. So, no, we have no reason to do that. We currently have twentythree members who are on the UNOS waiting list for an organ, which I find interesting. Much less than one percent of our members need organs. I thought we would get a lot of people who need organs. It hasn’t happened yet.

PBJ: What would you like to see happen to solve the huge problem of organ shortage in this country?

Undis: Ideally, I’d like everyone in the county to join LifeSharers. I think organs should go first to organ donors.

If everyone in the country did join LifeSharers, we’d have twice as many organs available and we’d save a whole lot of lives.

PBJ: How do you feel about financial compensation for the donation of organs?

Undis: It is my own personal belief that compensation is a good idea, but I am not here to advocate a specific proposal for compensation. There are lots of those out there. I think it is insane to think that we wouldn’t have more organs if people got paid for them. I think it’s a good idea. I also think there is about zero likelihood that compensation will become legal in the foreseeable future.

From a political standpoint, it is a complete non-starter, it just is not going to happen. You will never see your congressman or senator standing up there in Washington arguing for paying for organs. It is just not going to happen.

So, given that belief, what we’re doing is the best possible alternative. If they repealed the relevant section of the National Organ Transplant Act and allowed people to buy and sell kidneys, we would save thousands of lives a year and we would not need LifeSharers.

www.bioethicsjournal.com

Penn Bioethics Journal Vol. II, Issue 1 (2006)

The Body: From Part to Whole

Psychedelic Psychotherapy: The Ethics of Medicine for the Soul Author: Brian Anderson, University of Pennsylvania Faculty Sponsor: Dr. Martha Farah Abstract Psychedelic drugs like LSD and MDMA (Ecstasy) are known to have profound psychological effects on people. These substances are now being evaluated in clinical trials in the US as aids to psychotherapy.

The use of these substances in Transpersonal Psychology is thought to help patients by inducing spiritual experiences that lead to improved mental health. Some people challenge the claim that authentic spiritual experiences can be induced by drugs and still others question whether spirituality have any place in medicine at all. The potential emergence of the use of psychedelics in medicine calls for a consideration of these and many other concerns.

A hallucinogen is defined as “any agent that causes alterations in perception, cognition, and mood as its primary psychobiological actions in the presence of an otherwise clear sensorium” (Abraham, Aldridge, & Gogia, 1996, p. 287). Another word for “hallucinogen” is psychedelic, which comes from the Greek “to wander in the mind.” This is perhaps more accurate, since hallucinogenic drugs don’t actually produce true hallucinations; they engender illusions that are not normally mistaken for reality, but understood as an effect of the drug (Peoples, 2005). The majority of known psychedelic drugs are classified by the DEA (Drug Enforcement Agency) as Schedule I compounds, meaning that they are considered to be “substances that have no accepted medical use in the U.S. and have a high abuse potential” (Meyer & Quenzer, 2005, p. 194). This assertion that psychedelics have “no accepted medical use” is a matter of contention that has been gaining a larger audience for the past couple decades. Since the first large push for the use of psychedelics in research and medicine in the 1950s and 1960s, psychedelics have largely been shunned from the US medical community. Most recent evidence on the efficacy of using psychedelics in medicine has come from Brian Anderson is a Junior at the University of Pennsylvania and is majoring in Biochemistry.

Email: bta@sas.upenn.edu Dr. Martha Farah is the faculty sponsor for this submission. She is a Professor in Psychology and the Director for the Center for Cognitive Neuroscience at the University of Pennsylvania.

Address: 3720 Walnut Street/6241, Philadelphia, Pennsylvania 19104 Email: mfarah@psych.upenn.edu Penn Bioethics Journal Vol. II, Issue 1 (2006)

studies outside the U.S. or from reports of their underground use that necessarily surface to the public’s attention as anecdotes. Now, however, the question of whether psychedelic drugs have any valid medical use is being revisited. More serious consideration is being given to psychedelic psychotherapy, which uses psychedelics as catalysts of transcendent experiences in order to break down psychological barriers to communication and recovery. The director of the Drug Policy Program at UCLA, Mark Kleiman, said that “there’s obviously been a significant shift at the regulatory agencies and the Institutional Review Boards. There are studies [with psychedelic drugs] being approved that wouldn’t have been approved 10 years ago” (Bennet, 2005). Part of the reason for this change is due to organizations like the Multidisciplinary Association for Psychedelic Studies (MAPS) and the Heffter Organization, which sponsor and promote studies of the medical applications of these drugs. The main goal of Rick Doblin, the founder of MAPS, “is to see psychedelics legally recognized as medicines. But he also hopes that someday healthy people may take these substances for psychological or spiritual purposes” (Horgan, 2005). Horgan finishes: “After all, drugs such as Prozac and Viagra are already prescribed not just to heal the ill but also to enhance the lives of the healthy” (Horgan, 2005).

With at least four different FDA-approved studies on the medical applications of psychedelic drugs underway in the US, it seems likely that medical professionals and society as a whole will soon have to face the ethical questions that accompany the practice of psychedelic psychotherapy. The paper will not discuss issues of legality, but will instead focus on psychedelics’ effects on people’s spirituality as a possible mechanism for affecting their health, and on the question of the authenticity of a psychedelic-induced spiritual experience.

Psychological Mechanisms of Psychedelic Therapy When asked if he could see a future role for psychedelics in our Euro-American culture, Albert Hofmann, the discoverer of LSD, responded “Absolutely! ... The pathway for this is through psychiatry, but not the psychoanalytic psychiatry of Freud and not the limited scope of modern biological psychiatry. Rather, it will occur through the new field of transpersonal psychiatry” (Grob, 2002a, p. 20). He continued, “What transpersonal psychiatry tries to give us is a recipe for gaining entrance

www.bioethicsjournal.com

pbj 9

into the spiritual world” (Grob, 2002a, p. 20). The idea of mixing spirituality with medicine is for most people in Western society a foreign concept. While many people pray for a loved one’s health to improve, there exists the distinction in our vernacular between healing, which is seen as more spiritual or holistic, and curing, which is accomplished through medicine. In order to understand the ethical issues behind psychedelic psychotherapy we need to have a better understanding of how psychedelic psychotherapy can affect peoples’ notions of meaning and the imperishable self as well as their ability to relate to others.

Psychedelic-induced altered states of consciousness (ASCs) tend to include a certain set of common elements, one of which is a significant change in meaning and significance (Grob, 2005b). Changes in meaning and significance can be found not only in how a patient views the world, but also in how they think of the content of their therapy. Two of the main protagonists of the field of transpersonal therapy were Stanislav Grof and Abraham Maslow, who both thought that a person could attain their optimal psychological health through altered states of consciousness (Charles Grob, personal communication, March 11, 2005). ASCs were thought to “catalyze a therapeutic response,” possibly by adding significance to therapy for the patient. In one report from a man who used ayahuasca, a hallucinogenic concoction made from a vine, to treat his colon cancer, the man talks about the thoughts that he had during his trip and says “when the vine reveals such things, the impact is far more profound” (Topping, 2002, p. 149).

Psychedelics seem to be able to amplify the significance and meaning of thoughts, or at least bring people closer to certain kinds of thought. Myron Stolaroff, cofounder of the International Foundation for Advanced Study in Menlo Park, California believes that “the great value in these chemicals is that, in some way still not scientifically explained, they dissolve the boundaries to the unconscious mind,” which allows one to then experience “the great relief of being in touch with all aspects of one’s being. The joy and thrill of being totally alive comes from having complete access to all of one’s feelings” (Stolaroff, 2002, p. 102). The possibility of uncovering repressed thoughts and uniting a person’s fragmented mind sounds appealing, but Vivian Rakoff, emeritus professor of Psychiatry at the University of Toronto, cautions us that “every few years, something comes along that claims to be what Freud called the ‘royal road to the unconscious’” (Bennet, 2005). Transpersonal psychotherapy may be just another empty hope, but Rakoff says that research in psychedelic psychotherapy should be allowed to continue (Bennet, 2005).

Some of today’s current medical studies seeking to reexamine psychedelic drugs’ therapeutic potential focus

pbj 10

on their use in palliative care. Thousands of studies on the use of psychedelics in psychotherapy were published back in the 1950s and 60s before these drugs were scheduled. But many believe that “these early studies do not, ‘meet the standards of modern psychotherapy research,’” and that “cautious reexamination of their [the psychedelics’] therapeutic potential may be in order” (Abraham, Aldridge, & Gogia, 1996, p. 294). One such study is being run by Charles Grob, at the Harbor-UCLA Medical Center, and another is headed by John Halpern of Harvard University’s McLean Hospital. Both studies are looking to validate older studies that showed how the terminally ill were able to decrease their pain and anxiety about death through transpersonal psychotherapy.

Sherwood, Stolaroff and Har mon explain how transpersonal psychotherapy might mitigate existential ills associated with the dying process: There appears to emerge a universal central perception, apparently independent of subjects’ previous philosophical or theological inclinations, which plays a dominant role in the healing process…

Much of the “psychotherapeutic” changes are seen to occur as a process of the following kind of experience: The individual’s conviction that he is, in essence, an imperishable self rather than a destructible ego, brings about the most profound reorientation at the deeper levels of personality.

He perceives illimitable worth in this essential self, and it becomes easier to accept the previously known self as an imperfect reflection of this.

The many conflicts which are rooted in lack of self acceptance are cut off at the source, and the associated neurotic behavior patterns die away.

(Fisher, 2002, p. 107) This recognition of existing as an imperishable self and not the ego that is usually dissolved or partially dismantled during the psychedelic trip is what comforts the dying. It supposedly abates their fear of death by letting them believe that their entire self will not cease to exist after death, but only their physical self. Another perspective on the use of psychedelics by the dying comes from Joanne Lynn, president of Americans for Better Care of the Dying: “even in antiquity, some groups thought is was especially important to take whatever their local psychedelic was… when confronting mortality, whether it’s to see into the hereafter, improve spiritual growth or just numb yourself to the reality” (Weiss, 2004, p. A11).

But she followed up “it’s sometimes poetic, sometimes majestic, but often mundane work to wrap up one’s life.

I think it’s unlikely there’s a pill that will make that go away” (Weiss, 2004, p. A11).

A psychedelic pill might not make the mundane work of reconciling with one’s family go away, but it might

www.bioethicsjournal.com

Penn Bioethics Journal Vol. II, Issue 1 (2006)

Psychedelic Psychotherapy: The Ethics of Medicine for the Soul

make it easier. Elizabeth Kübler-Ross, psychiatrist and author of over 14 books on coping with dying believed that “simply prompting patients to express [their] many thoughts, feelings, and concerns would be helpful to them...

Such discussions could address concrete problems and relieve the patient of responsibilities and burdens that prevented the patient from dying in peace” (Kuczewski, 2004, p. 18). Considering the report by Eric Kast that “LSD is… capable of improving the lot of dying individuals by making them more responsive to their environment and family,” one can see how psychedelics might be able to facilitate this process of prompting patients to express themselves (Grof & Halifax, 1977).

If the interaction between a patient and his loved ones is important for the patient’s well being, then it might also be pertinent to consider the well being of the loved ones as a factor in a patient’s treatment. One study by Axelsson and Sjöden that measured factors affecting the global quality of life (QoL) of both cancer patients and their spouses found meaningfulness to have highest correlation with QoL in both groups (Axelsson & Sjödén, 1998). The study concluded by calling for “greater attention to the existential domain in palliative care, both when measuring and when trying to improve quality of life for these patients...” (Axelsson & Sjödén, 1998, p. 38).

This call for increased attention to existential concerns was echoed in another study that found that “patients with an enhanced sense of psycho-spiritual well-being are able to cope more effectively with the process of terminal illness and find meaning in the experience” (Lin & BauerWu, 2003, p. 69).

Spirituality If spirituality is related to QoL and meaning in life, then the use of psychedelics in transpersonal psychotherapy could mediate the effects of spirituality on meaning in life and QoL by inducing authentic spiritual experiences. Given the findings that spirituality is “positively related to quality of life, social support, effective coping strategies and negatively related to perceived stress, uncertainty,” and “psychological distress,” psychedelic psychotherapy should find applications in a number of different diseases from HIV to major depression (Tuck, McCain, & Elswick, 2000, p. 776).

(Studies quoted do not qualify whether they consider druginduced spirituality as a valid form of spirituality. Because spirituality is such a broad term, we will not assume that any form of spirituality is meant to be excluded from any measurement of spirituality unless specifically stated so by the author.)

People in Western society today are familiar with indirect (rather than direct) spiritual experience; they are more familiar with reading about these spiritual experiences (i.e. in scripture) than having them themselves. Some Penn Bioethics Journal Vol. II, Issue 1 (2006)

people believe that psychedelics can allow people to have such direct experiences, and for some, such as Albert Hofmann, “it is important to have the experience directly” (Grob, 2002a, p. 19). But not everyone is comfortable with the idea of obtaining spirituality from a pill. Druginduced spirituality can be viewed as spurious and artificial or too easy and too fast. These are all valid concerns, but it’s interesting to view them in the context of medicine.

Few people would say that an ill person who takes a pill and gets better has only achieved artificial health. Many medications are marketed as “fast acting,” but no one asks whether a man with athlete’s foot should be made to wait and suffer for a certain amount of time before he is allowed to experience relief. The difference between peoples’ attitudes towards taking a pill to improve a deficiency in health and taking a pill to fill a lack of spirituality probably lies in the idea that health is biological and physical, whereas spirituality is mental and metaphysical.

But didn’t we establish before that spirituality and biological health can be interrelated? If spirituality can be utilized to improve biological health, why can’t biological measures be taken to improve spiritual health? Why should it matter whether a person’s spirituality originated in a pill or a prayer if both types of spirituality can be shown to improve quality of life and give life meaning? It shouldn’t, but for some it does because drug-induced spirituality destroys some of the comforts of dualism. The spirit or soul is a comforting concept because it is an entity which cannot be touched by the harshness of the material world around us. The concept of the soul allows for the belief that we do not lose everything upon dying, that part of us may continue. To think that a material substance, a pill, could not only alter a person’s mind but their soul can be threatening to the perceived rarefaction of the soul. But as Sherwood et al. (as cited in Fischer, 2002) explained, psychedelics are thought only to dismantle the ego, leaving the essential self (the soul) exposed yet untouched; in other words, the soul is revealed, but not altered. This experience could actually leave people that take comfort in body-soul dualism feeling just as secure as before, if not more so, since they would have had a view of the soul, unobstructed by the ego, to convince themselves of its durability.

Even if it were agreed upon that psychedelics can cause authentic spiritual experiences, there remains the concern, as Steven Hyman, a professor of neurobiology at Harvard Medical School, argues: “one worries that insights gained under… different cognitive states with illusions may seem strange and distant from the vantage of our ordinary life” (Bennet, 2005). Hyman is restating the problem of applying insights obtained in an altered state of consciousness to changing who we are in our ordinary state of consciousness. But this problem is a

www.bioethicsjournal.com

pbj 11

product of our culture, not a psychological fact. The content of dreams that some people may refer to as illusory or meaningless are considered to be real by some cultures. It is impossible to say whether insights gained in dreams are or aren’t applicable to ordinary waking consciousness, no matter how “strange” they may seem.

We’d like to think that there must be some significance to dreams since we spend about one third of our lives asleep, potentially dreaming, and since we even “dream” when we’re awake via daydreams. So while Hyman’s concern is a valid one, it really only gives us more reason to rigorously investigate the potential of altered states of consciousness on “our ordinary life.”

Conclusion Psychedelics are powerful drugs that have great potential to help as well as harm. This paper discusses the use of psychedelics in transpersonal psychotherapy and the ethical issues that accompany their employment as medicines. After examining how these drugs are thought to work in psychotherapy and their ability to cause authentically spiritual experiences, we should be better prepared to make informed decisions about the use of these drugs that not only affect one’s body, but one’s mind or even soul. US law says psychedelics have no medical application, but depending on the results of a handful of current studies, this may soon change. Compared to many other drugs, psychedelics are relatively benign physiologically. Thus, many arguments against their use are moral, not medical, objections. And as Francis Fukuyama points out: “We are… unwilling to take a clear stand on drugs solely on the basis that they are bad for the soul” (Fukuyama, 2002, p. 56). Whether a drug is good or bad for the soul and a person’s spirituality is a tough question to ask, but that does not make it impossible to answer. The soul aside, how drugs affect consciousness is a tough question in and of itself. Like any other state of consciousness, the psychedelic mind-state is poorly understood, but its implications for human spirituality and

pbj 12

psychiatric health nonetheless warrant a thorough investigation, which in view of their potential benefits could even be seen as unethical not to pursue.

References 1. Abraham, H., Aldridge, A., & Gogia, P. D. (1996). The Psychopharmacology of Hallucinogens.

Neuropsychopharmacology, 14, 285-297.

2. Axelsson, B., Sjödén, P. (1998). Quality of life of cancer patients and their spouses in palliative home care. Palliative Medicine, 12, 29-39.

3. Bennett, D. (2005). Dr. Ecstasy. Retrieved February 10, 2005, from Center for Cognitive Liberty and Ethics: http://www.cognitive liberty.org/shulgin/adsarchive/shulgin-nytmag.htm 4. Fisher, G. (2002). Successful Outcome of a Single LSD Treatment in a Chronically Dsyfunctional Man. In C.S. Grob (Ed.), Hallucinogens: A Reader (pp 104-112). New York: Jeremy P. Tarcher/Putnam.

5. Fukuyama, F. (2003). Our Posthuman Future: The Consequences of the Biotechnology Revolution. Picador.

6. Grob, C. (2002a). A Conversation with Albert Hofmann. In C.S. Grob (Ed.), Hallucinogens: A Reader (pp 15-22). New York: Jeremy P. Tarcher/Putnam.

7. Grob, C. (2002b). The Psychology of Ayahuasca. In C.S. Grob (Ed.), Hallucinogens: A Reader (pp 185-216). New York: Jeremy P. Tarcher/Putnam.

8. Grof, S. & Halifax, J. (1997). The Human Encounter with Death.

New York: E.P. Dutton.

9. Horgan, J. (2005) Psychedelic Medicine: Mind bending, health giving. Retrieved 25 April, 2005, from NewScientist.com website: http://www.newscientist.com/channel/health/ mg18524881.400 10. Kuczewski, M. (2004) Re-Reading On Death and Dying: What Elizabeth Kulber-Ross Can Teach Clinical Bioethics. The American Journal of Bioethics, 4, W18-W23.

11. Lin, H., & Bauer-Wu, S. (2003). Psycho-spiritual well-being in patients with advanced cancer: an integrative review of the literature. Journal of Advanced Nursing, 44, 69-80.

12. Meyer, J., & Quenzer, L. (2005) Psychopharmacology: Drugs, the Brain, and Behavior. Sunderland: Sinauer Associates, Inc. 13. Peoples, L. (2005). Lecture 1 on Hallucinogens. University of Pennsylvania. Philadelphia. 29 March.

14. Stolaroff, M. (2002). Using Psychedelics Wisely. In C.S. Grob (Ed.), Hallucinogens: A Reader (pp 94-103). New York: Jeremy P. Tarcher/Putnam.

15. Topping, D. (2002) Making Friends with Cancer and Ayahuasca.

In C.S. Grob (Ed.), Hallucinogens: A Reader (pp 138-155). New York: Jeremy P. Tarcher/Putnam.

16. Tuck, I., McCain, N., & Elswick, R. (2001). Spirituality and psychosocial factors in persons living with HIV. Journal of Advanced Nursing, 33, 776-783.

17. Weiss, R. (2004). ‘Ecstasy’ Use Studied to Ease Fear in Terminally Ill. Washington Post 27 December: A11.

www.bioethicsjournal.com

Penn Bioethics Journal Vol. II, Issue 1 (2006)

The Body: From Part to Whole

PERSPECTIVES

Ethical Considerations on Organ Transplantation in China Author: Changmin Jiang, Peking University Health Science Center Faculty Sponsor: Dr. Yali Cong Abstract Although organ transplantation in China began almost 10 years later than in western countries, it’s undergoing a rapid change these years. Now, Chinese hospitals are witnessing that they can operate almost all kinds of organ transplantations, clinically or experimentally. Take kidney transplantation as an example. By the end of 2000, China had performed 34,832 kidney transplantation operations. In the year of 2001 alone, 5,561 transplantations were done (Nanyan, 2004). While technology is no longer a major problem, it is still not an easy topic. It is a perfect example to show that sociological and ethical considerations often lag behind science and technology. Nowadays, organ transplantation is facing a lot of social and ethical problems which are quite complicated and related to many areas of social life.

In this paper, I would like to share some phenomena surrounding organ transplantation in China and my considerations on ethical issues about organ resources and allocation.

ETHICAL ISSUES ABOUT ORGAN RESOURCES IN CHINA Five thousand kidney transplantations a year may be a large number compared with other countries, but it is still far below the need of 1.5 million Chinese patients suffering from kidney failure (Guangqi & Rui, 2004).

Moreover, there are over 4 million Chinese patients waiting for cornea transplantations, but only 700 of them can get cornea donations every year. And most local eye banks get zero donations for most months of a year. As to heart, liver and other organs, the situations are even more severe (Zianyan, 2004).

Changmin Jiang is a Senior at the Peking University of Health Science Center and is majoring in Biomedical English.

Email: jcm730@163.com Dr. Yali Cong is the faculty sponsor for this submission.

Dr. Cong is a Professor and the Deputy Director of Medical Ethics Program at Peking University Health Science Center.

Address: Medical Ethics Program, Peking University Health Science Center, 38 Xueyuan Road, Haidian District, Beijing, 100083, China Emails: ethics@bjmu.edu.cn or congyali@sohu.com

Penn Bioethics Journal Vol. II, Issue 1 (2006)

Analysis of the serious phenomenon of organ shortage There are several organ resources in China. Cadaveric organs are the most common. So, I only emphasize the possible reasons of shortage from the cadaveric level.

(1) Traditional culture A survey performed by Luo Jingbin and his team shows that the supportive rate of cadaveric organ donation in China reduces along with the increase of age and the decrease of educational level (Jingbin et al., 1998). The relatively low supportive rate in the elder population is mainly related to the traditional concept towards one’s body. One of the fundamental doctrines of Confucianism says that one’s body, including hair and skin, comes from his parents. Therefore, it is a basic requirement for filial piety to protect one’s body from any kind of injuries. And some people (especially from the countryside) hold an idea that one has to keep his body posthumously intact to ensure metempsychosis.

There are 800 million peasants in China, which take up at least two thirds of Chinese population, but this group contributes little to cadaveric organ donation. This situation may also be related with their traditional ideas due to their relatively isolated living pattern and lower education level.

(2) Economic condition In regards to the peasants, their economic condition is another possible factor that results in the low cadaveric organ donation rate among them. In modern China, most peasants still live in relative poverty. Organ transplant is still very expensive for them. An interesting paradox arises from this economic disadvantage. The peasants do not have the opportunity to access organ transplants if needed.

It is arguably unfair to let this vulnerable population (who are unfairly treated and can’t enjoy many social welfare programs due to a very complex social history), to change their view of organ donation for goal of repaying society.

(3) Organ Acceptance System According to the same survey, the supportive rate of cadaveric organ donation in urban China is 69.61% (Jingbin et al., 1998). This is much higher than the actual rate of cadaveric organ donation in China, which means that there has been a failure to transform potential organ donors into real ones. This may be related with the situation in China, which is not convenient enough to show one’s will of cadaveric organ donation.

www.bioethicsjournal.com

pbj 13

The current regulation of cadaveric organ donation in China requires the potential donors to contact the local Red Cross or other related institutes (usually located in medical schools) by themselves and then put their personal information registered there. The application form is effective only when signed by the donor and all the directlyrelated members of his family. The lack of publicity causes most potential donors to not even know how to finish this procedure. It means that only those who really have a strong will to donate become registered donors.

We can call this procedure donor-positive, which excludes those who don’t resist, or even favor, cadaveric organ donation. Another problem lies in the after-register supervision. According to a survey performed by Beijing Tongren Hospital, 52% of the registered donors have been out of contact because of a change of address or phone number (Guangqi & Rui, 2004). This shows the deficiency of the current supervising method.

Another issue is that for most registered donors, their will does not turn into reality because they die from old age and their organs can not be used anymore. Therefore, the current register system of organ donation in China cannot fulfill this requirement well.

(4) The donor’s family The cadaveric organ donor needs to be approved by all the directly-related members of the donor’s family because this is required in the donation application. Family members are often deeply involved in this organ donation process due to the traditional, family-centered culture.

This precondition will constrain the realization of donation. Furthermore, even if the family members do sign the application form, it is likely that they will not let the Red Cross take the cadaver’s organs. The fulfillment of the donation must be handled by the family member.

Therefore, the failure to reach unanimity within a family is one of the obstacles of fulfilling one’s will of cadaveric organ donation (Juan et al., 2004).

Optimistically, the statistics show that more young people are becoming more open-minded towards cadaveric organ donation (Jingbin et al., 1998).

Organ donation from executed prisoners in China The dilemma of organ extraction from executed prisoners is unavoidable when discussing the situation of organ resources in China. Although cadaveric organ donation of executed prisoners is permitted in China, the situation is not as bad as that depicted by Carl Becker: “China… transplants and trades organs from executed prisoners” (Nanyan, 2004). It is true, however, that some prisoners’ donations are not voluntary. It is important to note that while some prisoner-donations are voluntary, others may be persuaded by their families to donate in atonement for their crime.

pbj 14

Personally speaking, I do not support the taking of cadaveric organs from executed prisoners as a long-term practice, because it is possible for the prisoners to be greatly pressured and deprived of autonomy. Under such circumstances, it is difficult to determine whether the decision really is free or not. I am relieved to see that, in academia, several papers have argued that the organ donation from the executed prisoners is not ethically justifiable.

ETHICAL CONSIDERATIONS ON ALLOCATION OF ORGANS Due to the scarcity of organs, their allocation is becoming a sensitive topic. This is a very serious and difficult problem because, on many occasions, the decision about how to allocate organs will determine whether someone lives or dies. Unfortunately, the allocation of donor organs is far from fairn and is not well managed in China.

Nowadays, the decision-making for organ allocation is mainly at the hospital level. Hospitals decide where the organs go. This situation has lead to several ethical issues, especially since hospitals mainly depend on themselves because the government does not provide enough involement. So, it is it not surprising that they take economics as the only criteria of organ allocation. Many common people may be kept waiting for several or even tens of years without a chance to get an organ transplant, while people who are wealthy, powerful, or have some special relationship with the decision maker of the hospital can obtain much easier. For example, Fu Biao, a famous Chinese actor, had a liver transplantation twice within two months of the summer of 2005.

Because of the separation between organ acceptance and organ allocation, the allocating process may be very chaotic. Usually the hospital hastily looks for organ needy patients when a cadaveric organ donor comes suddenly (Xianyan, 2004).

SUGGESTIONS The ethical issues about organ transplantation are very complex and relate to many broad aspects, so I will only provide several suggestions based on my above analysis.

(1) Publicity and education The pathway of organ donation should be known to everybody, especially those in the rural areas. Letting this population have the opportunity to get in touch with cadaveric organ donation could gradually shape their ideas towards it.

(2) Communication between potential donors and their families.

This is closely related to the previous suggestion, as the family members must be educated of the potential donor’s will and understand the situation.

www.bioethicsjournal.com

Penn Bioethics Journal Vol. II, Issue 1 (2006)

Ethical Considerations on Organ Transplantation in China

(3) Reformation of the donation acceptance system In order to raise the donation rate, the donor-positive must be changed into a society positive pathway. The government must provide facilities to eliminate inconveniences and build new information networks, or use existing systems. It should also learn from other countries, such as indicating people’s will to donate on driving license cards (Liang, 2003).

(4) Expediency in reforming the laws The draft of organ transplantation regulation has been in discussion for at least five years, because of the complexity of the problem. However, unified regulation is necessary to avoid possible disputes.

(5) Standardization of allocation criteria An allocation system should be regional, not national, and should be standardized a list based on time sequence of entering the waiting list.

References

1. Cao Nanyan: Updating Statue and Idea after TechnologyAdvance in Organ Transplantation in China. Medicine and Philosophy, 2004, 25 (4): 30-32 2. Lin Guangqi, Sheng Rui: Practical Thinking towards the Scarcity of Organ Donation in China. Medicine and Philosophy, 2004, 25 (12): 38-39 3. Huang Xianyan: Several Problems about Organ Donation in China. Journal of Panzhihua University, 2004, 21 (4): 111-113 4. Luo Jingbin, Wei Tong, Gao Binchang, Wang Jinping, wang Chenyan: A Survey and Analysis of the Possibility to Promote Organ Donation in China. Chinese Medical Ethics, 1998, (4): 28-29 5. Yang Juan, Zhao Min, Li Hong, Xu Zhiyong: Research on the Conciousness of Cornea Donation among University Students.

Chinese Medical Ethics, 2004 17(6): 29-31 6. Qui Renzon: Whether Cadaveric Organ Donation of the Executed Prisoners can be Justified Ethically. Medicine and philosophy, 1999, 20 (3): 22-25 7. Xiao Liang: Organ Transplantation and Organ Donation.

Teaching of Biology, 2003, (8): 55-56

Editor’s note: Pursuant to PBJ policy regarding submissions in a language other than the author’s primary one, this article has been edited for clarity. No major changes were made, nor original meanings altered. We worked with the author to alter some usage and structure and to clarify the original submission. For more information on PBJ policies regarding submissions and the editorial process, please visit our website or contact the Executive Editor by emailing editors@bioethicsjournal.com.

Penn Bioethics Journal Vol. II, Issue 1 (2006)

www.bioethicsjournal.com

pbj 15

The Body: From Part to Whole

Selling with Dignity: Organ Selling and the Safeguarding of Human Dignity Author: Julia Joseph, University of Toronto Faculty Sponsor: Dr. Stuart J. Murray Abstract With increasing wait times to receive an organ transplant, there is a rising need to institute a more efficient organ procurement system. As an incentive for organ donation, it has been suggested that money be given to donors. Yet many maintain that human dignity, as characterized by Immanuel Kant, would be destroyed should organ selling become legalized. This assertion, one interpretation of Kant’s conception of dignity, further claims that a monetary amount could never compensate for the loss of dignity. However, an alternative interpretation of Kant’s definition insists that dignity would not be destroyed during an organ sale, and argues that a price does not always denote something’s entire worth. This paper explores these two opposing interpretations of Kant’s characterization, ultimately arguing that accepting the latter interpretation would lead to both a reduced occurrence of preventable, unwanted deaths and a preservation of human dignity.

Presently, organ procurement organizations worldwide promote a message of altruistic and voluntary organ donation, with the aim of saving the lives of ill patients.

This message, however, is not resonating within a large majority, and waiting lists are growing to unprecedented lengths. Many groups, including the American Medical Association, have suggested that offering money as an incentive for organ donation may lead to greater organ availability. There is a genuine likelihood in the future that such a system will be realized, and as such, this controversial proposal is garnering much attention. Central to this issue is the question of how the concept of human dignity would be affected by the legalization of a market for organ selling. A common view is that human dignity would be destroyed by allowing organs to be sold for money. By critically examining the interpretation of dignity which has given rise to this contention, I hope to show

Julia Joseph is a Senior at the University of Toronto and is majoring in Psychology.

Email: julia.joseph@utoronto.ca

that this is an unnecessarily limited view on human dignity.

Instead, I wish to explore a second interpretation of dignity that is emerging as a response to particular societal practices. This interpretation suggests that human dignity would be safeguarded throughout the process of an organ sale.

Before delving into the relation between organ selling and human dignity, it is necessary to clarify the common understanding of dignity expressed by those who oppose organ selling. The writings of Immanuel Kant and Cynthia Cohen, former Executive Director of the National Advisory Board on Ethics in Reproduction in Washington, D.C, capture what we commonly understand as dignity.

Kant notes that dignity describes anything that is “exalted above all price and so admits of no equivalent” (Kant, 1964, p.102). Cohen, in turn, describes Kant’s idea of dignity as an “unconditioned worth that all people have just in virtue of being human” (Cohen, 1999, p. 292).

Combining these two statements, one would consider human beings as “infinitely above all price” (Kant, 1964, p.103), or priceless. In other words, if an object is said to have a price, then “something else can be put in its place by an equivalent” (Kant, 1964, p.102), and as result, we will not be able to say that such an object possesses dignity.1 Elsewhere, Kant explains the relation between the human organs and the dignity that one possesses “in virtue of being human” (Cohen, 1999, p. 292). He states that “the body is part of the self; in its togetherness with the self it constitutes the person” (Kant, 1963, p. 166).

Therefore, Kant does not view the person as detached from his or her internal organs. It logically follows that “any body part that is necessary for the functioning of the whole person […] is endowed with the dignity of that person” (Cohen, 1999, p. 292). Hair, for example, is not necessary for human functioning. Consequently, it does not possess dignity.

The definition of dignity, then, appears to possess three facets. First, dignity signifies an analytical worth that is possessed by all humans. (It is inherent in the definition It appears that Kant is utilizing the concept of money in these statements in response to Thomas Hobbes, who wrote that, “[t]he value or worth of a man is as of all other things, his Price; that is to say, so much as would be given for the use of his Power” (qtd. in Cohen, 1999, p.293). It is evident that Hobbes identifies dignity with price. Hobbes and Kant, therefore, both agree that dignity denotes the worth of a person; however their definitions diverge in the description of this worth.

1

Dr. Stuart J. Murray is the faculty sponsor for this submission. He is a Social Sciences and Humanities Research Council of Canada (SSHRC) Post-doctoral Fellow, and a Lecturer in Philosophy at the University of Toronto.

Address: University of Toronto, 215 Huron St., Toronto, Ontario M5S 1A2 Email: stuart.murray@utoronto.ca

pbj 16

www.bioethicsjournal.com

Penn Bioethics Journal Vol. II, Issue 1 (2006)

Selling with Dignity: Organ Selling and the Safeguarding of Human Dignity

of “human” that such a being has dignity.) Second, a monetary amount can never be attached to this dignity, because dignity is “infinitely above all price.” Third, all body parts that are integral to the functioning of a human possess this dignity.

As we shall see, this definition has been interpreted in two distinct manners, creating opposing opinions regarding the acceptability of organ selling. Those who argue for the ethical permissibility of organ selling have arrived at their conclusion by interpreting dignity in the context of present societal practices, such as organ donation and restitution payments to the families of murder victims.

By viewing dignity in light of current reality, these proponents have concluded that legalized organ selling is the responsible way to ensure that human dignity is safeguarded.

However, others continue to interpret dignity more traditionally, leading them to identify organ selling as an affront. The three main arguments in support of this view, I argue, are based on an unnecessarily limited understanding of dignity. The arguments discuss (1) how the selling of integral body parts entails a denial of human dignity, (2) how no monetary amount could ever compensate for the loss of human dignity, and (3) how legalization would lead to people viewing each other as “repositories of organs” (Cohen, 1999, p. 294), rather than “bearers of a special dignity” (Cohen, 1999, p. 294).

I turn now to assess each of these arguments in turn.

The first argument is based on a superficial reading of Kantian dignity described above. It suggests that when “integral organs” are given a price and sold, the dignity of a person is destroyed in the process of the sale. Here, integral organs are imbued with dignity, because of their role in creating functioning bodies. Cohen notes that our belief regarding the dignity possessed by these integral organs is so powerful that “we are reluctant to sell [organs] even after we have died and no longer need them” (Cohen, 1999, p. 292). In other words, maintaining the dignity of the integral organs themselves begins to take on an absolute importance, while the value of the whole person is arguably diminished. This ignores the reality that there are countless people who desperately require organs, and hastily applies the definition of dignity to organ selling without addressing the issue of genuine human need in society.

The second argument relies on the view that dignity is “infinitely above all price” (Kant, 1964, p. 103). The implication is that once an integral organ is removed to be sold, no amount of money could ever compensate for this loss of dignity. L.D de Castro, Vice Chair of the UNESCO International Bioethics Committee, makes this point clear: “The selling of an integral body part constitutes commodification because it makes calculable the value of the organ and the whole human being to which it is Penn Bioethics Journal Vol. II, Issue 1 (2006)

integral” (de Castro, 2003, p. 144). This interpretation of the commodity is, once again, strictly Kantian - anything that has a price can be replaced “by an equivalent” (Kant, 1964, p. 102). But this argument ignores the fact that there are monetary exchanges that do not aim to fully quantify the commodity, or to compensate with an equivalent exchange value.

The third argument envisions society after organ selling has been legalized, and asserts that the success of such a system would cause people to view one another as simply “repositories of organs”(Cohen, 1999, p. 294), rather than as “moral agents with a special dignity”(Cohen, 1999, p.

294). Cohen asserts that human nature is such that it causes us to view objects in a mutually exclusive manner, as either (a) possessing dignity, or (b) possessing a market value. Cohen argues that selling integral organs, which possess dignity, “demeans [the very humanity of people]” (Cohen, 1999, p. 294) because a price is being attached to the organs, and hence to people. When organs are given prices, she maintains, people become repositories of commodities and dignity is destroyed because something cannot have both a price and dignity at the same time.

Cohen’s argument, that human beings view objects in a mutually exclusive manner, assumes a pessimistic view of human nature. Additionally, whether organs are exchanged for free or for a fee, potential organ recipients could always view others as “repositories of organs.”

The traditional arguments against organ selling may be addressed by R.R Kishore, President of the Indian Society for Health Laws and Ethics, and de Castro, who present an alternate interpretation of the conception of dignity. This interpretation views organ selling as a practice that would safeguard, rather than threaten, human dignity.

Kishore does not absolutely disagree with Cohen’s interpretation. Both hold we ought not to engage in practices that destroy human dignity. From this, Cohen concludes that organ selling is impermissible. Against this view, Kishore argues that dignity is being destroyed in the organ procurement system as it stands today. Kishore argues that the only way to reclaim this dignity would be to legalize organ selling.

Kishore asserts that any action that saves the life of a person (who wishes to live) is of absolute importance (p. 363). Kishore’s logic is that whenever a person wishes to live (and his or her life is in danger of ending), we ought to act in the hopes of saving this person’s life.

Therefore, if he or she wishes to live but will die without receiving a new organ, then “any act done to save [this] life cannot be construed as contrary to human dignity” (Kishore, 2005, p. 363). In the organ procurement system today, it is unlikely that such an individual would receive a life-saving organ in sufficient time. These individuals, then, are simply left to die. As Kishore notes, it is this situation which is “contrary to human dignity” (p. 363).

www.bioethicsjournal.com

pbj 17

As well as leading to the untimely death of people, Kishore states (p. 364) that the present organ procurement system denies life-saving transplants to people who have engaged in irresponsible behavior (due to organ shortages), and prematurely certifies people as dead (in an attempt to expand the pool of donors). Kishore states that such practices are not “consistent with human dignity” (p. 364).

Consequently, the organ procurement system today destroys human dignity from a number of different ethical perspectives.

Kishore suggests that dignity can be regained through the legalization of organ sales. In such a system, organs could be obtained in a timely manner; more lives could be saved; there would be fewer moral biases when deciding who may live and die; and finally, the time of death could be more correctly certified. The legalization of organ selling would allow such a vision to become commonplace.

Note that Kishore never denies that people or their integral organs possess dignity. Rather, Kishore emphasizes that the present organ procurement system leads to the denial of human dignity. This denial of dignity occurs because people are dying preventable deaths.

Hence, while Kishore and Cohen may share many of the same premises, their conclusions are clearly divergent. While Cohen refers to the dignity or worth of our personal bodies, Kishore refers to the dignity or worth of our actual existence. It may be logical to privilege Kishore’s interpretation to ensure that our physical wellbeing is secure, before considering, as Cohen does, whether our personal bodily dignity is protected. After all, we can only philosophize about the dignity of our bodies when they exist! Those who have died while waiting for an organ cannot ponder questions about dignity. In order to decrease the number of preventable deaths, then, it will be important to institute a new system.

With regards to the second argument, that no monetary amount could ever compensate for the loss of human dignity, de Castro points out that a price tag does not indicate the total value of a commodity. Rather, a price tag should be seen as an attempt to “quantify some aspects of [the] usage” (de Castro, 2003, p. 145) of something’s infinite value. For instance, de Castro notes that there is a recognized method used for calculating the amount of money a murderer must pay the victim’s family to compensate them for “damages.” No one would ever say that this method “capture[s] the full value that we ascribe to human life” (de Castro, 2003, p. 145). Such a method never aims to capture that infinite value; it simply tries to quantify some aspect of the murdered victim’s life. Another example is that of the money offered by families of a missing person as a reward for locating their beloved relative. It is unreasonable to say that this practice is disgusting, and unreasonable to assume that it shows

pbj 18

exactly how much the family felt this missing person was worth.

De Castro asserts that the notion of dignity and organ selling is analogous to these examples. The price, attached to an organ in the process of a sale, is not intended to compensate for the infinite value of the organ or for a supposed loss of dignity. As de Castro writes, “setting a finite amount of damages does not constitute a negation of the infinite value of human life” (p.145). Thus, dignity is not necessarily destroyed in the practice of organ sales, as no monetary amount can (nor attempts to) compensate for the loss of an organ.

Once again, the third argument mentioned by opponents to organ selling asserts that after the legalization of organ selling, people would view one another as “repositories of organs” (Cohen, 1999, p. 294) rather than “bearers of a special dignity” (Cohen, 1999, p. 294). This argument is idealistic or naïve, however, because “it is a fact that a black market for human organs already exists” (de Castro, 2003, p. 145).

Additionally, the logic of this third argument is flawed because it does not solely apply to a system of organ selling. If one is a desperately ill person on an organ waiting list, it is probable that one would begin to view all others as potential donors. When one is in dire need of something, it is instinctive behavior to disregard seemingly irrelevant things like the dignity of others and focus all energy upon satisfying the need. In this case, one would be consumed with the goal of obtaining a functioning organ. Hence, one would view others as “repositories of organs” rather than “bearers of a special dignity.” The current procedure of organ transplantation relies on donors to freely give their organs to others; without donors providing their organs this procedure could not continue. Therefore, the argument that people will become “repositories of organs” can be used to oppose the entire practice of organ transplantation itself.

On the other hand, it seems logical to infer that when organ selling is legalized, people’s organ needs will be more easily met, and their worldview will be less desperate. This would actually increase the likelihood that we view other as “bearers of a special dignity.” To understand how this is possible, it is necessary to refer to the earlier examination of argument two. In that examination, it was noted that when a monetary amount is applied to an object, that value is not an attempt to quantify the infinite worth of an object. When a market value is paid to a donor, in return for an organ, this money is a symbolic token of the worth of the organ. Nowhere in this organ sale is the donor’s dignity or worth given a finite value. Therefore, there is no reason why we should consider potential organ donors as commodities – the money exchanged in an organ sale could never quantify the infinite value of an organ

www.bioethicsjournal.com

Penn Bioethics Journal Vol. II, Issue 1 (2006)

Selling with Dignity: Organ Selling and the Safeguarding of Human Dignity

donor (or any individual). In this way, individuals can be bearers of a commodity, yet not be a commodity themselves. People, then, are able to possess dignity, while also possessing a commodity with market value. As such, they are both “repositories of organs” and “bearers of a special dignity.”

References 1. American Medical Association. (1995). Financial incentives for organ procurement: ethical aspects of future contracts for cadaveric donors. Archives of Internal Medicine, 155, 581-9.

Penn Bioethics Journal Vol. II, Issue 1 (2006)

2. Cohen, Cynthia B. (1999). Selling bits and pieces of humans to make babies: The Gift of the Magi revisited. Journal of Medicine and Philosophy, 24, 288-306.

3. de Castro, L. D. (2003). Commidification and exploitation: arguments in favour of compensated organ donation. Journal of Medical Ethics, 29, 142-146.

4. Kant, Immanuel. (1964). Groundwork of the metaphysic of morals (H.J Paton, Trans.). USA: Harper & Row. (Original work published 1785) 5. Kant, Immanuel. (1963). Lectures on ethics (Louis Infield, Trans.). USA: Harper Torchbooks. (Original lectures transcribed 1780) 6. Kishore, R. R. (2005). Human organs, scarcities, and sale: morality revisited. Journal of Medical Ethics, 31, 362-365.

www.bioethicsjournal.com

pbj 19

The Body: From Part to Whole

Critical Objections to Michael Steinberg’s Opt-In System for Kidney Transplantation Author: Matthew Kelly, Brown University Faculty Sponsor: Dr. Rosalind Ladd Abstract The growing realization that kidney diseases are a significant contributor to morbidity and mortality in this nation has prompted discussion regarding the availability of kidneys for transplant operations.

However, the current dearth of donated kidneys keeps the number of transplant operations low. David Steinberg rejects current kidney transplant practice and, instead, proposes an “Opt-In” model for donated kidneys to attempt to remedy the low availability for donated kidneys. Here, I argue that the Opt-In model (i) inappropriately privileges merit over need for medical resource allocation decisions, and (ii) needlessly privileges like-reciprocation in the construction of a system that forces a comparison of two incomparable rights. The use of this meritbased resource distribution paradigm presents individuals with a contract that effectively coerces them into unfairly sacrificing one right for the sake of another.

In 2001, an estimated 392,023 people in the United States suffered from end-stage renal disease (United States Renal Data System, 2003, p. 60) and 40,974 deaths were attributed to nephritis, nephrotic syndrome, and nephrosis in 2002 (Kochanek et. al., 2004, p. 5). In light of these statistics, policy makers have struggled to develop paradigms to increase kidney availability through the harvesting of cadaver kidneys. In David Steinberg’s “OptIn System,” (2004), individuals must agree to allow researchers to harvest their kidneys after they have died in order to be assured access to kidney transplants in life.

Here, I argue that the Opt-In model (i) inappropriately privileges merit over need for medical resource allocation decisions, and (ii) needlessly privileges like-reciprocation in the construction of a system that forces a comparison of two incomparable rights. The use of this merit-based resource distribution paradigm presents individuals with a contract that effectively coerces them into unfairly sacrificing one right for the sake of another.

Matthew Kelly is a Senior at Brown University and is double majoring in Biomedical Ethics and Biology.

Email: Matthew_D_Kelly@brown.edu Dr. Rosalind Ladd is the faculty sponsor for this submission. She is a Visiting Scholar in Philosophy at Brown University.

Address: Brown University, Box 1918, Providence, Rhode Island, 02912 Email: Rosalind_Ladd@brown.edu

pbj 20

In his case for the Opt-In system, Steinberg argues that our current kidney allocation paradigm allows for unacceptable suffering, citing the risks healthy individuals take when they donate kidneys. The risks inherent in live kidney donation, coupled with the lack of benefit to the donor, necessitate a decrease in our dependence upon live kidney donation. As current technology requires the harvesting of kidneys from people, the only other sources for kidneys are cadavers.

Steinberg also finds unethical any system that allows for individuals to receive kidneys for transplantation without donating their kidneys post-mortem (Steinberg, 2004, p. 6). In effect, he argues that these individuals violate the Universal Law formulation of the Categorical Imperative: if all individuals were to act as he acts, there would be no kidneys available for transplantation. A system that supports the creation of two separate groups of individuals: “organ givers” and “organ takers,” therefore, is unethical. He thus proposes his Opt-In system, whereby access to kidneys in the event of illness is contingent upon one’s agreement to provide his kidneys post-mortem.

Individuals are asked when they are healthy to determine whether or not they will opt into the system.

Steinberg’s support for the Opt-In system turns upon two arguments: Argument A holds that live kidney donation represents significant harm to donors. Therefore, we ought to devise a system whereby live kidney donation will cease.

Critics have scrutinized Steinberg’s reasoning in Argument A (Jacoby, 2004, p. 16), and I will not focus upon it here.

Instead, I shall focus my attention on Steinberg’s second argument (Argument B), which holds that individuals who take kidneys without donating kidneys after death commit an ethical wrong.

Steinberg’s support for Argument B may appear appealing: The Opt-In system will increase numbers of organs by creating a subcategory of individuals in society consisting of those who will provide their kidneys upon death and understand that they will receive a kidney if needed in life - they are the sharers. It therefore appears to represent a just agreement, whereby one receives benefit based upon his contributions. However, historically, meritbased systems of resource allocation that privilege the “better person” (e.g. intellectually, morally) have been the objects of intense moral debate. This topic has been discussed in depth by bioethicists, and I will not belabor it here. However, even in instances of triage, when medical resources are scarce, many critics are hesitant to accept

www.bioethicsjournal.com

Penn Bioethics Journal Vol. II, Issue 1 (2006)

Critical Objections to Michael Steinberg’s Opt-In System for Kidney Transplantation

systems whereby moral saints are treated while others are allowed to suffer. To these critics, we should first ask how medical need factors into resource allocation. Steinberg’s system recognizes the scarcity of kidneys and suggests a system of reciprocity whereby merit becomes the deciding factor in resource allocation. Indeed, his system even prevents those who choose not to opt in and who later develop kidney disease from then opting in (Steinberg, 2004, p. 11). Their need does not trump the principle that they lacked the merit necessary to opt in when they had the chance.

Despite my objections to merit-based medical resource allocation, some may argue that in the case of kidney availability, we currently rely upon the good deeds of the givers while allowing others to take without sharing.

For these critics, basing a system only on need neglects the presumed unfair actions of the takers. Indeed, individuals need kidneys, and individuals also have kidneys that, postmortem, no longer serve their physiological function. Therefore, Steinberg proposes a system that operates via reciprocity, whereby an individual may only receive a kidney if she has promised to donate one postmortem. In doing so, he attempts to construct a fair system that is not exclusively need-based.

If Steinberg’s call to reciprocity is to be heeded, he has the task of showing that the individual who donates an organ is committing an act that can be fairly compared to the individual who takes an organ. Furthermore, he must argue that the taking of an organ can only be justly reciprocated by organ donation. I will argue against both claims, beginning with the latter.

In the Opt-In model, “the organ taker must decide whether they would be willing to perform the same morally valuable act they would want and accept from others [sic]” (Steinberg, 2004, p. 6). Here, Steinberg’s proposed paradigm does not merely require reciprocity for goods received: it requires like-reciprocity. The taking of a kidney, in his model, can only be reciprocated with the donation of a kidney. I agree with James Lindemann-Nelson (2004), who argues that we may reciprocate a kind act from another individual with a different kind act. Furthermore, the dynamic nature of our reciprocal interactions with fellow individuals may be a good thing: it may allow for us to treat the beneficiary of our act as an independent individual by tailoring our actions in our own way to the individual. We may reciprocate without performing identical tasks, and this may be a good thing. However, Steinberg unfairly assumes that reciprocation requires that the taking of a kidney be met with the donation of a kidney.

For some individuals, my reasoning regarding likereciprocation may not suffice. They would maintain that, in the case of medical emergencies, there are no alternative acts that compare with organ donation and that Steinberg’s Penn Bioethics Journal Vol. II, Issue 1 (2006)

endorsement of like-reciprocation is valid. Still, I believe that it would be wise to question another underlying assumption of his analysis: that the giving and taking of a kidney are like acts. Initially, they may appear tantamount to one another, for a kidney is transported from one body into another in each case. However, a closer examination reveals differences between the two. If I choose to receive a kidney, I am accepting into my body an instrument necessary for my survival. The role of the kidney changes, however, after death. It is no longer doing what a kidney is “supposed to do.” It serves a different function. Indeed, we would be surprised if, when asked why an individual wished to exercise her right to keep her kidney postmortem, she answered, “To filter my blood.” Perhaps, therefore, it is not always true that “a kidney is a kidney is a kidney.” (For the moment, I will assume that the interests individuals have in keeping their kidneys post-mortem and in receiving a kidney in sickness are rights. Later, I will argue that this move to rights is appropriate for a discussion of the Opt-In system.)

Thus, when we ask individuals to equate the right to a kidney in life with the right to a kidney in death, as the Opt-In system requires, we may be asking them to compare and equate two very different, unequal things. Shortly, I will argue that the right to a kidney in life and the right to a kidney in death are not comparable rights. First, however, I shall analyze a highly-regarded element of the Opt-In system: its emphasis upon individual autonomy.

In Steinberg’s paradigm, an individual can choose not to opt into the system, citing interests against post-mortem body modification. The presence of a choice of this nature is sometimes taken to mean that autonomy is being respected. It is dangerous, however, to assume that any paradigm that places a choice in an individual’s hands automatically respects his or her autonomy. A contract is not ethically sound simply because it provides options for an individual. We ought to express serious reservation for any contract that forces individuals to select one of two poorly balanced rights. My justification for this lies in the inherent ability for mandatory contracts to force the hand of individuals when very different rights are pitted against one another. For example, a contract that forces someone to choose between the right of free speech and the right to part his hair in the middle pits two poorly balanced rights against one another. Individuals may choose the right to freedom of speech because they view it as more important. However, the contract unfairly compared the rights.

This brings the discussion back to the question of the rights the Opt-In system asks individuals to compare: the right to a kidney in life versus in death. I agree with Fritz Allhoff (2004), who argues that the Opt-In system compares a right that, when sacrificed, leads to death, with another right that does not share this property. Rights

www.bioethicsjournal.com

pbj 21

that are necessary for survival have a special place in our minds; few other rights can compare with them.

However, I believe that there is a deeper reason for why Steinberg’s comparison ought to be rejected. Steinberg argues that individuals ought to choose whether to opt in or not when they are healthy, operating behind Rawls’ veil of ignorance. But, the Opt-In system poses a peculiar problem for an application of the veil of ignorance: it forces individuals to choose between a right that is exercised in life and one exercised in death. “What interests might a deceased person have regarding the retention of a kidney?” is hardly an easy one to answer. It may not, in fact, be one that can be fairly considered behind a veil of ignorance.

Therefore, it is dangerous to assume that the rights are alike for the purposes of like-reciprocation, and it may be wrong to assume that they are comparable at all for the purposes of reciprocity theory in general.

Up until now, I have discussed the rights individuals have to post-mortem control of their kidneys. However, one might raise objections regarding the validity of this right. Interestingly, it is not necessary to argue for this post-mortem right in a criticism of the Opt-In system, as the Opt-In paradigm itself relies upon its validity. If individuals do not have a legitimate claim to their kidneys after death, it would be wrong to allow for them to keep them in light of the many people who die for lack of healthy kidneys. We would consider a paradigm unethical if it allowed individuals’ inactivity to harm others when they could prevent it at no cost to themselves. In short, if individuals do not have a right to keep their kidneys postmortem, then the Opt-In system ought to be rejected as unethical. Thus, interestingly, the Opt-In paradigm depends upon the validity of some post-mortem right to keep one’s kidneys.

pbj 22

By this reasoning, Steinberg himself recognizes a legitimate claim to one’s organs post-mortem. However, he then constructs a paradigm that unfairly judges the merit of individuals and provides them with contract that requires them to choose between two incomparable rights.

Here, I have endeavored to show that Steinberg’s proposal rests upon broad assumptions regarding the nature of merit and reciprocation. What’s more, it forces individuals to enter into obligatory, nonnegotiable contracts involving mutually exclusive provisions that are incomparable. We must give careful attention to any such contract, particularly when one provision includes the right to healthcare. Whether or not merit ought to be considered in questions of kidney allocation is still an open question.

However, the Opt-In system imports a number of assumptions regarding merit and reciprocation that careful analysis reveals to be unsupported. As the Opt-In system relies upon the soundness of these assumptions, it ought to be rejected as a solution to current dilemma in kidney transplantation availability.

References 1. Allhoff, Fritz, (2004). Discriminating Against “Organ Takers.’

The American Journal of Bioethics. 4(4), 31-33.

2. Jacoby, Liva, (2004). Solidarity: An Important Aspect of the “Opting In” Paradigm. The American Journal of Bioethics. 4(4), 16-17.

3. Kochanek KD, Murphy SL, Anderson RN, & Scott C. (2004).

Deaths: Final data for 2002. National vital statistics reports; vol 53 no 5. Hyattsville, Maryland: National Center for Health Statistics.

4. Lindemann Nelson. James. (2004). Utility, Fairness, and What Really Matters in Organ Provision. The American Journal of Bioethics, 4(4), 27-29.

5. Steinberg, David. (2004). An “Opting In” Paradigm for Kidney Transplantation The American Journal of Bioethics, 4(4), 4-14.

6. United States Renal Data System. (2003). 2003 Annual Data Report: Atlas of End-Stage Renal Disease in the United States.

National Institutes of Health.

www.bioethicsjournal.com

Penn Bioethics Journal Vol. II, Issue 1 (2006)

The Body: From Part to Whole

The Medicated Self: Implications of Prozac on Selfhood, Embodiment, and Identity Author: Cara Rabin, University of Pennsylvania Faculty Sponsor: Dr. Paul R. Wolpe Abstract As knowledge about molecular neurobiology and genetics has grown and as biotechnology is increasingly able to modify and moderate what was once considered permanently determined by our biological and genetic fate, selective serotonin reuptake inhibitors, particularly Prozac, have been pushed to the forefront of bioethical debates. The use of Prozac and other pharmacological interventions in the brain raises concerns that other aspects of biotechnology have not. The brain is considered the seat of mind and consciousness: Therefore, interventions in the brain have a unique set of ethical implications. Though today we can alter many things about ourselves with great ease, the use of Prozac has broadened the scope of changes we can make to our moods, temperaments and feelings. This article aims to open an essential dialogue about Prozac’s impact on identity and selfhood.

Is it ethical to use a drug intended for therapeutic purposes to alter the self in ways that transcend the drug’s medicinal intention? Fundamentally, then, are drugs able to change the self at all? More specifically, can antidepressants known as selective serotonin reuptake inhibitors (SSRIs) fundamentally transform the self ? This raises perpetually unanswerable questions: What is the self ?

How is selfhood constituted? Can selfhood be dramatically altered? And, ultimately, does the use of Prozac, as an archetypal SSRI, transform, modify, or otherwise change a fundamental self ? These questions emerge in the context of a society with greater and greater psychopharmacological capacities.

Conceptions of Selfhood What is the self ? Since the dawn of time, philosophers, scientists, religious leaders and writers have wrestled with the notion of self and identity. Traditionally, Cara Rabin is a Junior at the University of Pennsylvania and is majoring in Health and Societies.

Email: crabin@sas.upenn.edu Dr. Paul R. Wolpe is the faculty sponsor for this submission. He is an Associate Professor of Sociology and a Senior Faculty Fellow of the Center for Bioethics at the University of Pennsylvania.

Address: 3401 Market St, Suite 320, Philadelphia, Pennsylvania 19104 Email: wolpep@mail.med.upenn.edu Penn Bioethics Journal Vol. II, Issue 1 (2006)

a person’s sense of self and identity is understood to refer to his or her defining elements of personality and character. Implicit in this definition is the belief that there is something stable and enduring about the self. In such a view, this “fundamental core of selfhood,” has been defined by the personality, thought to be composed of a combination of temperament and character. Temperament was thought to be composed of inborn biological characteristics while character was thought to be the result of life experiences and acquired social attributes (Kennedy, 1998, p. 382).

Sociological conceptions of the self have generally focused on a self that is developed in a continual process of interactions with others. Sociologist George Herbert Mead conceived the self as an entity that is not fixed in time but is constantly in flux because its development occurs in interactions, which change throughout the life course (Howson, 2003, p. 18). Sociologist Erving Goffman also viewed the self as an entity created through interactions with other people; the self is defined in a context. He equated the character one performs with the true self (Goffman, 1959, p. 37). Similarly, Jean Paul Sartre viewed the self as an amorphous and malleable entity. He believed that individuals are thrown into the world without any determinate nature. In Sartre’s view we are entirely self-creating rather than having a self created by genes (DeGrazia, 2000, p. 37).

A biological conception of the self rests on the fact that genes and biochemistry are large factors in determining our character, personality, and temperament.

The self is essentially programmed from birth. Biological selfhood in its most extreme level is expressed by Lauren Slater in Prozac Diary. She states, “Prozac’s view and now mine, that history is meaningless, stories no more than convenient construction. That the person, a mere concoction of chemicals, is programmed from birth, pure beast” (Slater, 1998, p. 114). Inherent in a biological conception of selfhood is the notion that mood, personality, and character are informed by a biological infrastructure. The biological view of the self is ultimately reductionist in that it diminishes selfhood to smaller and smaller components: neurons, cells, and now the DNA within the cells. American psychiatry adopted this biomedical model in the 1950s, although the model was not embraced by broader culture at the time. The biological conception of the self was controversial precisely because it sug gests that psychiatric symptoms can be

www.bioethicsjournal.com

pbj 23

decontextualized as primarily biological or genetic phenomenon (Gardner, 2003, p. 118).

According to Carl Degler, a Stanford sociologist, cultural needs influence what science discovers and then markets as scientific truth. Thus, conceptions of self are intimately tied to the society in which they arise. During the 1950s and 1960s, biological conceptions of personality were viewed with suspicion and hostility. Forty years later, in a society such as ours filled with the material fruits of a new biolog y—CAT scans, MRIs, prosthetics, recombinant DNA, genetically engineered plants, and of course, psycho-pharmaceuticals—a view that favors biological understandings of the self is consistent with the scientific zeitgeist. In the 21st century, therefore, it is necessary to understand the self through two lenses: one open to biology and the other to culture. We now know that genes and environment interact at every level— behavior, feeling, chemistry, and anatomy. Genetic material can be modulated by external circumstances. Neurons and synapses are plastic. In his bestselling book, Listening to Prozac, psychiatrist Peter Kramer claims that experiences leave a biochemical and anatomical mark or scar on the brain (Kramer, 1993, p. 122). Therefore, the conception of biological selfhood must now be modified to include the notion that genes are in fact impacted by our social experiences. Neither the social nor the biological conceptions of self and identity are sufficient to understand how the self is constituted today.

The Magic of Medication: How Prozac Works Once scientists established that biological infrastructures contribute to some of the components that comprise the conceptions of the self, such as temperament, cognition and mood, they set out to create drugs that could modify malfunctions in mood and disposition (Barondes, 2003, p. 19). However, all hypotheses must be viewed within a socio-cultural context.

Likewise, antidepressants work within the dominant sociocultural hypothesis that brain chemicals, specifically neurotransmitters, contribute to depression. Within the framework of a biological contribution to depression, the transformative capabilities of Prozac can only be appreciated through an understanding of the changes it affects on characteristics fundamental to conceptions of the self and identity. Neurotransmitters are chemicals that nerve cells use to communicate with one another.

(Barondes, 2003, p. 22). The communication between the neurotransmitters occurs at points of contact between nerve cells called synapses. Antidepressants are thought to work by increasing the influence of these neurotransmitters in the spaces between synapses, thereby ensuring that they are available for interaction and communication for longer periods of time. Prozac specifically inhibits the neuronal uptake of serotonin

pbj 24

(5HT) by blocking the channels that suck away too much serotonin, making it available at the presynaptic neuronal membrane for longer periods of communication (Gardner, 2003, p. 113).

Understanding the biochemical workings of Prozac credits a disclaimer. Though scientists have a general idea about how Prozac binds with receptors at the cellular level, its precise mechanism of action is still unknown. In fact, mechanisms of action are unknown and hotly debated for all chemical types of antidepressants. Depression itself is not fully understood by biologists. The reigning biogenicamine hypothesis is just that—a hypothesis. In fact, Kramer argues that it is “demonstrably false or incomplete” (Kramer, 1993, 283). Psychiatrist Peter Breggin similarly critiques the biopsychiatric framing of depression expressed in the biogenic-amine hypothesis. He defines depression as an emotional state of despair, desperation or other responses that do not necessarily have a biological or genetic cause (Gardner, 2003, p.120). Despite both physicians’ understandable suspicion of the unproven biogenic-amine hypothesis of depression, Prozac’s seductive popularity arises within a technological advanced society in which the mass media and the scientific community favor a fundamentally biological hypothesis of depression and a corresponding biological treatment.

The Lovechild of Medicine and Technoscience According to Chris H. Gray in Cyborg Citizen, one great creation of the modern era is “technoscience.” The marriage of technology and science in modern society is profoundly changing human culture and medicine in unprecedented ways (Gray, 2001, p. 13). With the developments of the biotech millennium, human lifespan, mental and physical abilities and even personality are being molded in ways which were previously unimaginable (Lewis, 2003, p. 52). Prozac must be understood in our, as Donna Haraway states, “cyborgian world.” To Haraway, we are all theorized and fabricated hybrids of machine and organism—cyborgs (Lewis, 2003, p. 54). In this modern world of hybrids, we can readily alter our biology like never before. The expressions of an individual’s neuronal architecture are no longer understood to be inevitable or irreversible. Within our technoscience culture, which challenges our traditional western dualisms, it no longer makes sense to consider biology or environment, nature or nurture, alone. We must consider their synthesis and how that contributes to a sense of self in the postmodern world.

Despite our increasingly mutable biology, we cannot ignore the fact that the use of Prozac and other pharmacological interventions in the brain raise concerns that other aspects of technoscience have not. The brain is considered the seat of mind and consciousness; it is considered the locus of selfhood in Western society and

www.bioethicsjournal.com

Penn Bioethics Journal Vol. II, Issue 1 (2006)

The Medicated Self

therefore interventions in the brain have a unique set of ethical implications (Farah and Wolpe, 2004, p. 36). The drug’s global affect—its ability to extend social popularity, business acumen, self-image, energy, flexibility, mood and flirtatiousness—touches too closely for many on fantasies about medication for the mind. (Lewis, 2003, p. 50).

However, the notion of feeling liberated through substances is certainly not new. Has man not been using substances to alter brain functioning since the dawn of time? What makes the SSRIs different from alcohol, cannabis and other naturally occurring compounds that go back to our earliest history? As I write this paper, I am drinking coffee; its active ingredient, caffeine, enhances both arousal and attention. Caffeinated beverages, drugs and alcohol all induce changes in the brain which can affect mood, temperament and disposition. LSD, alcohol and amphetamines all have wide reaching effects on brain chemistry; the line between their use and the widespread use of Prozac is a fine one.

The high level of existential questioning that encompasses the use of Prozac arises because of its aweinspiring ability to alter the brain with a chemical and anatomical selectivity that was never before possible. This is where medicine and technoscience meet. Prozac is special in its selectivity within the brain and how that specificity enables its action. Alcohol and caffeine, among other drugs, have widespread affects on brain chemicals; they do not specifically seek out and bind to a particular neurotransmitter in the way that Prozac can. Furthermore, as Harvard Psychiatrist Robert Aranow explains, Prozac enables a “conservation of mood” that other drugs don’t.

Amphetamine, alcohol and other street drugs used to elevate mood all ultimately result in a crash. Prozac breaks the rule of “what goes up must come down” (Kramer, 2005, p. 44).

Prozac not only differs from illicit drugs like cannabis and LSD, but also differs from the psychopharmaceuticals that came before it. Until SSRIs were discovered, most psychotropic medications had significant risks and side effects that severely limited their attractiveness. Many people were unable to withstand the side effects of tricyclic antidepressants and MAO inhibitors (Barondes, 2003, p.

39). As Kramer describes, Prozac’s ability for neurochemical modification with few downsides encourages many people who would never have taken an earlier antidepressant to be open to taking such an SSRI. SSRIs, with a better balance of properties than earlier antidepressants, have transformed the practice of psychiatry. In fact, they have transformed the nation into the “Prozac Nation” we live in.

Does Prozac Change the Self ?

There is no easy answer to the question of whether Prozac changes the self, just as there is no singular concept Penn Bioethics Journal Vol. II, Issue 1 (2006)

of the self in the modern world. Understanding the impact of Prozac on the modern sense of self is an absorbing and daunting task. Kramer believes that Prozac fundamentally alters the self. He suggests that Prozac should be understood as a drug not that acts on a particular malfunction, which is at the root of an illness, but rather as one that contributes to a general reshaping of personality. He believes that Prozac has transformative powers; it can instill self-confidence, lend the introvert the social skills of a salesman and enhance a person’s performance at work and play. Kramer’s central concern with Prozac involves its ability to alter these aspects of personhood, as he illustrates with a study of his first patient on Prozac, Tess. After “listening” to Tess on Prozac and to other patients treated with the drug, Kramer concludes that Prozac’s action often goes far beyond a single intended effect; to him, “you take it to treat a symptom, and it transforms your sense of self ” (Kramer, 1993, p. 267).

However, not everyone believes that a drug alone can alter the self. Ronald Dworkin points out that after an individual starts taking medication, life continues by virtue of its own momentum. He elaborates, “if before taking the drug, people hiked for recreation or shopped because it was their favorite pastime, they generally do so afterward” (Dworkin, 2001, p. 97). The tastes and interests of an individual do not change. External circumstances cannot be altered with Prozac. An individual on psychotropic drugs still generally reacts to specific environmental events in an appropriate manner; his or her mood will go up and down according to environmental stimuli. Prozac’s mechanism is decidedly specific to a biochemical process.

The world outside the individual’s neurons inevitably continues.

David DeGrazia comes to the same conclusion as Dworkin—that Prozac doesn’t change the fundamental self—through a different lens. He believes that “a person can be true to oneself even while transforming and even creating the person one is. One’s self is not merely waiting to be discovered after all… Part of the human endeavor is deciding and trying to become who we want to be” (DeGrazia, 2000, p. 34). He proposes that we consider the image of the self not as something given, but as something that is dynamic and mutable (Brown and Toufexis, 1993, p. 62). He situates Prozac as one method that an individual can use to affect his or her selfhood, which will inevitably change over time through nonpharmacological means.

Other psychiatrists focus on Prozac’s pharmacological “magic,” yet contend that the chemical changes it produces do not alter the self. As quoted in Time, Dr. Daniel Auerbach argues that Prozac cannot change personality, but that “what gets changed is symptoms of a disease” (Brown and Toufexis, 1993, p. 62). Prozac enables a person’s true personality, imprisoned by an illness like major

www.bioethicsjournal.com

pbj 25

depression or minor dysthymia, to emerge. It cannot manipulate people. It can, however, contends psychiatrist Hyla Cass, correct an imbalance and allow people “to be who they can be.” It can free an individual from a depressed state that inhibits his or her ability to feel and show love and it might be able to liberate an individual’s creativity. But a new selfhood can’t be purchased in a pill.

If Prozac isn’t a new self packaged in pill form, what is it? Prozac’s effect on the self may be considered analogous to a catalyst’s affect on a chemical reaction. A chemical catalyst is a substance that increases the rate of a reaction that would already occur by providing a new pathway for the reaction to occur with a lower energy of activation (Zumdahl, 2005, p. 741). Like a catalyst, Prozac enables an individual to more fully actuate his underlying desires and potential; it allows more readily for an expression of a self that is already there. Prozac increases the “surface area” people have available to experience life in both positive and negative ways. Thus, Prozac may be seen as a catalyst that allows the individual the chance to exploit the productive optimization of biological capital (Fraser, 2001, p. 68). It provides a path for the self to be actualized.

It also, to quote from Kramer, “catalyzes the precondition for tragedy—participation” (Kramer, 1993, p. 258). In this way, Prozac’s action is strictly biochemical—it acts on the serotonin (5T) receptor. By doing this, Prozac cannot alter the entirety of an individual’s self-conception. If we are, after all, more than just an information superhighway of neurons separated completely from the world outside the brain, then Prozac can only potentiate change.

Ultimately, it must be the person who does the changing.

The ethical issues raised by Prozac’s use in the postmodern world are as complex as the drug’s biochemical mechanisms. The use and usefulness of Prozac raises

pbj 26

questions about the biological foundations of who we are and how the self is constituted. Prozac forces us to reexamine what is constant in the self and what is mutable, what can be modified and what should be altered. At the very least, by activating a dialogue of what it means to be human in a postmodern world, Prozac privileges a discourse to which we all must attend.

References 1. Barondes, Samuel H. Better than Prozac. Oxford: Oxford University Press, 2003.

2. Brown, Deborah Edler and Anastasia Toufexis. “The Personality Pill,” in Time Vol. 142, (October 11, 1993): 61-63.

3. Degrazia, David. “Prozac, Enhancement and Self-Creation,” The Hastings Center Report 30, no. 2 (2000): 34-40.

4. Dworkin, Ronald W. “The Medicalization of Unhappiness.” The Public Interest. (Summer 2001): 85-99.

5. Farah, Martha and Paul Root Wolpe. “Monitoring the Manipulating Brain Function.” The Hastings Center Report 34, no. 3 (May-June 2004): 35-45.

6. Fraser, Miriam. “The Nature of Prozac,” History of the Human Sciences. London: SAGE Publications, (2001): 56-84.

7. Gardner, Paula. “Distorted Packaging: Marketing Depression as Illness, Drugs as Cure” in Journal of Medical Humanities Vol. 24, Nos.1/2 (Summer 2003): 105-130.

8. Goffman, Erving. The Presentation of Self in Everyday Life.

New York: Doubleday, 1959.

9. Gray, Chris Hables. Cyborg Citizen. New York: Routledge, 2001.

10. Howson, Alexandra. The Body in Society: An Introduction.

Cambridge: Polity Press, 2003.

11. Kennedy, Deveareux. “Biological Psychiatry and the Postmodern Self,” Sociological Forum, Vol. 13, No. 2. New York: Springer (June 1998): 377-386.

12. Kramer, Peter. Against Depression. New York: Viking, 2005.

13. Kramer, Peter. Listening to Prozac. New York: Viking, 1993.

14. Kramer, Peter. “The Transformation of Personality,” Psychology Today Vol. 26, (July/August 1993): 42-53 15. Lewis, Bradley E. “Prozac and the Post-human Politics of Cyborgs.” Journal of Medical Humanities Vol. 24 (Summer 2003): 49-63.

16. Slater, Lauren. Prozac Diary. New York: Random House, 1998.

17. Zumdahl, Steven S. Chemical Principles, Fifth Edition. New York: Houghton Mifflin Company, 2005.

www.bioethicsjournal.com

Penn Bioethics Journal Vol. II, Issue 1 (2006)

The Body: From Part to Whole

Transplantation of Ovarian Tissue Author: Alix Rogers, University Of Pennsylvania Faculty Sponsor: Dr. Paul Root Wolpe Abstract New transplantation procedures such as the transplantation of ovarian tissue raise especially complex ethical and legal questions associated with organ transplantation. This paper discusses two ways that ovarian tissue transplants could be performed, namely re-implantation and transplantation from donor to recipient. Focusing on issues of reproduction, this paper then examines these two procedures under the light of concerns over the medicalization and commodification of reproduction, interpretations of reproductive rights and safety. I conclude with the expectation that ovarian tissue transplantation will become ethically and legally acceptable in the distant future.

Over fifty years ago, on December 23, 1954, the first successful organ transplant was performed (Jonsen, 2000, p103). Since then medicine has made great strides in tissue and organ transplantation. The ethical and legal questions raised by organ transplantation are multi-faceted and thought-provoking. The issue becomes even more complex with the transplantation of reproductive organs, particularly the ovaries. Transplanted ovaries could be utilized to help women overcome infertility or delay reproduction. However, the possible implications and ramifications of performing such transplants are profoundly intriguing and worthy of detailed consideration and examination.

There are two main ways that ovary transplants could be performed. The first is re-implantation of a removed ovary into the same individual. Some medical treatments, like chemotherapy, cause previously irreversible damage to the patient’s ovaries, rendering them infertile.1 Freezing the ovary and re-implanting it after the cessation of ovary damaging therapies could preserve these women’s fertility.

Thus, ovarian transplantation could be a safeguard treatment for patients about to undergo other damaging treatments because it may be the only way to preserve their fertility in the wake of a life-threatening disease.

Alix Rogers is a Junior at the University of Pennsylvania and is double majoring in Health and Societies - Bioethics and Philosophy in Science.

Email: rogersa@sas.upenn.edu Dr. Paul R. Wolpe is the faculty sponsor for this submission. He is an Associate Professor of Sociology and a Senior Faculty Fellow of the Center for Bioethics at the University of Pennsylvania.

Address: 3401 Market St, Suite 320, Philadelphia, Pennsylvania 19104 Email: wolpep@mail.med.upenn.edu Penn Bioethics Journal Vol. II, Issue 1 (2006)

This treatment option of “saving for later use” could also be used to stop the biological clock of aging for women worried about the effects of older eggs. For some healthy women, this would be a very attractive option if available and viable, though arguably not medically necessary. It is a biological fact that female fertility and egg viability decline with age; however, an increasing number of women are delaying pregnancy for work and other commitments. While men are able to freeze sperm very easily, freezing eggs has proven to be particularly difficult and unsuccessful (Powell, 2004, p.40). Thus, freezing ovarian tissue and re-implantation could make it possible for a 50 year-old woman to be as fertile and to have the same quality of eggs as a 25 year-old. Re-implantation of ovarian tissue would also result in the genetic offspring of the woman and could be a desirable option for women who find themselves in such situations.

The second main application of ovarian transplantation is the more traditional model from a donor to a recipient. This option could be used to solve reproductive problems resulting from age, illness or genetic conditions that cause a woman to have malfunctioning ovaries. The possibility of such a procedure could prove more effective then hor mone therapies and more desirable than surrogacy. Ultimately, both forms of transplantation would ideally result in viable mature eggs being produced by the implanted ovary, thus allowing for in-vivo fertilization and live births.

In the past, this possibility has not been considered in great detail, because it did not seem very feasible.

However, recent scientific developments are beginning to draw attention to the possibilities and unique issues. In 2004, the world received the announcements of two very stunning medical breakthroughs. In September, a team of Belgian scientists announced the birth of the first baby born from an ovarian transplant (Practice Committee of the American Society for Reproductive Medicine, 2004, p.993). The researchers had previously removed and frozen strips of tissue from a woman’s ovary before she underwent chemotherapy for Hodgkin’s lymphoma. As a result of the chemotherapy, the woman’s ovaries stopped functioning. Doctors then re-implanted the ovarian tissue into the woman and eleven months later she became pregnant (Donnez, 2004, p.1405).

In October of 2004, American doctors reported the second successful pregnancy following an ovarian transplant (Lichtarowicz, 2004). In this case, the functioning ovary of a woman was transplanted into her identical twin sister who had been infertile since her teens.

www.bioethicsjournal.com

pbj 27

While this procedure involved the transplant of an ovary from one individual to another, it was not a complete breakthrough for ovarian transplantation. Since the women were identical twins (and thus have the same genes), the immunological reaction by the recipient to the foreign tissue was likely to be very minimal. Immunological reaction and rejection of transplanted organs are some of the largest hurdles to overcome with transplants.

However, immunosuppressant drugs have proved effective in humans in preventing rejection of other foreign tissue, so it is likely that this can even be overcome in ovarian transplants between unrelated individuals.

The two studies described above answer the important question of feasibility raised in the debate over ovarian transplants. In both cases, transplanted ovarian tissue became fully functional and produced viable eggs in the recipient; it is very clear that ovarian transplants could provide a feasible solution for certain types of infertility.

The ethical and social issues raised by ovarian transplants differ substantially from the considerations of other types of organ transplantation. Since ovarian transplants do not preserve life, but instead help to create it, what should be done?

Putting issues of entitlement, payment and insurance coverage aside, the main question that will be addressed in this paper is whether ovarian transplantation (reimplantation or traditional donor-recipient) is an acceptable means of reproduction. There are several issues that need to be considered when ethically evaluating ovarian transplantation. First, there are concerns over the increasing medicalization and control over reproduction that would result from ovarian transplantation. Secondly, concerns over commodification and the status of ovaries should be taken into account. Thirdly, interpretations of reproductive rights need to be considered. Finally, concerns over safety must be addressed.

Leon Kass’ “Wisdom of Repugnance” (Kass, 2004, p.137) argument could be used to oppose all forms of ovarian transplantation. Kass purports that if learning about a new technology produces discomfort in an individual (a so-called ‘yuck factor’), then this is an expression of a “deep wisdom” (Kass, 2004, p.146) for actions that violate the things we “rightfully hold dear” (Kass, 2004, p.146). Thus, Kass argues that the ovarian transplantation takes the “humanity” out of procreation, and ultimately our society (Kass, 2004, p.143). There is the possibility of a ‘yuck’ reaction when considering ovarian transplantation.

Kass’ argument is strongest against ovarian transplantation with unrelated exchanges because it undermines conventional notions of familial ties. The resulting child would be genetically unrelated to the mother despite having come from an egg that developed in her body. However, because something is not historically

pbj 28

“natural” or “normal” doesn’t necessarily point to its inherent wrongness (Caplan, 2004, p.174-175). Societal values and norms are constantly changing because they are a result of the history and culture of that society.

History has shown that reactions by the populace to new technologies such as IVF and the birth of Louise Brown were initially ones of discomfort and disgust. However, today IVF technolog y (especially eg g donation, a technolog y fundamentally similar to ovarian transplantation) is considered acceptable and ethical and it would be unreasonable to argue that our humanity has suffered as a result.

The second major ethical concern of ovarian transplantation is the potential commodification of body parts and children. Ovarian transplants are particularly interesting as they are reproductive organs, thus the real reason for transplantation is to produce viable eggs. Nonreproductive organs are generally considered to be a nationally controlled “resource” distributed based on need, with the donor not receiving any benefits from donation (Fox and Swazey, 1992). On the other hand, oocyte donation has become largely a compensated “donation” (Anchor, Caplan and McGee, 1998, p.230) Advertisements for desirable egg donors often offer enormous sums of money in exchange for donation. Currently, a significant debate rages over the appropriateness of compensation for oocytes donation (Anchor, Caplan and McGee, 1998, p.230). The American Fertility Society has declared that “donors should be compensated for the direct and indirect expenses associated with their participation, their inconvenience and time, and to some degree, for the risk and discomfort undertaken” (American Fertility Society, 1998, p.232). Should ovary donation then be compensated, following the model of oocyte donation, or should donation follow the organ model where compensation is not involved? I believe ovarian donation should follow the compensation model because of the special reproductive nature of the ovary as an organ. Even if compensation may increase commodification, it will not do so any more than oocyte donation already has.

Furthermore, since a market for kidneys and other organs has already developed, enforcers would be hard-pressed to ensure that ovary ‘trafficking’ does not occur.

The third major ethical concern associated with ovarian transplantation is reproductive rights. While reproductive freedom is considered to be an important part of liberty, what this freedom entails is a heavily †debated issue. Is it a negative freedom, such that everyone has the right to choose whether or not to have children?

Or is it a positive right such that everyone must have access to methods to help them to reproduce how and when they want? (Robertson, 2004, p.179) The argument for reproductive rights is a matter of interpretation as to how far those rights extend.

www.bioethicsjournal.com

Penn Bioethics Journal Vol. II, Issue 1 (2006)

Transplantation of Ovarian Tissue

In my opinion, even a negative interpretation of reproductive rights could justify the possibility of ‘therapeutic’ re-implantation, especially in cases where women have become infertile after undergoing treatment such as chemotherapy. The purpose of the reimplantation would not be to delay fertility, but to prevent it from being damaged by a life-saving treatment they must undergo. Thus, the prospect of ovarian reimplantation would act to restore fertility that these women should not have had taken away in the first place. Since medical intervention rendered them infertile, it is understandable that medicine should be used to restore their fertility. Furthermore, from a principalist approach, the possibility of ovary re-transplant could be seen as an ethical requirement for patients undergoing these sorts of damaging treatments. Principalism argues that ethical decisions in medicine should be guided by four equally weighted and valued principles; autonomy, beneficence, non-maleficence and justice (Childress, 1998, p.62).

Treatments that damage the patient’s reproductive organs (and thus cause harm) are justified because they perform the ultimate benefit of keeping the patient alive. If these damages could be mediated by medical intervention then, it could be easily argued that we are obliged to offer them.

The line between medical treatment and cosmetic procedures/enhancement is often not clear. However, in cases such as these, I believe that ovary transplantation is a medical treatment for patients about to undergo treatments for an underlying disease.

The supportive stance can not be taken as strongly when considering women merely trying to sidestep time and their biological clocks. Ovarian re-implantation would, in these cases be used for the more ‘cosmetic’ purpose of delaying reproduction until it is more convenient. While from an insurance coverage perspective this would clearly make claims less worthy, should women still be allowed to freeze their ovaries for later use? I believe that reproduction is a positive right such that the reasons and motivations behind the procedure cannot be used to prevent the women from undergoing it. Legally speaking, a woman’s ovaries are part of her, and she should be allowed to do whatever she wants with them. While I would not grant this procedure the label of a necessary medical treatment, I do not believe that this should require we prohibit the procedure. If we allow men to store their sperm, women to freeze their eggs (though with a dubious success rate), and men and women to have face lifts, ovary re-transplantation should not be treated differently.

The claim to an ovary transplant from a donor requires an even more positive interpretation of reproductive rights, because it not only entails rights over the control of one’s own reproduction, but access to another’s reproduction as well. Thus, the informed and non-coerced consent from the donor is clearly an essential Penn Bioethics Journal Vol. II, Issue 1 (2006)

part of ovary transplantation, so that the reproductive rights of the donor are not violated. This is another reason why ovarian transplants should be held to a different standard than other organ transplants. Under no circumstances should cadaveric donor ovaries be used unless there is specific and accepted consent for the donation, because this would violate the reproductive rights of the donor. Ultimately, I would agree that properly regulated ovarian transplantation in either form of reimplantation or transplantation is not a reproductive right, but it also does not violate reproductive rights and so should be permissible under our current medical and ethical system.

One final major set of concerns revolves around the issue of safety. The possible effects on children who are born from eggs that have developed from a transplanted and frozen ovary are unknown. It would be wrong to allow ovary transplants if they caused horrible birth defects, developmental problems or behavioral problems. Ovary transplantation has not yet moved beyond the research stage, so clearly safety has yet to be fully evaluated; however, there is no significant body of evidence to support this assumption of unacceptable risks. The use of frozen sperm and embryos is standard procedure despite an incomplete examination of the possible effects on the resulting children. If we allow these technologies to be used, then there is no reason why ovary transplantation should not also be included in our treatment of infertility.

Currently, the American Society for Reproductive Medicine considers ovarian transplantation to be experimental and should “not be advertised as established clinical services offered by assisted reproduction programs” (Practice Committee of the American Society for Reproductive Medicine, 2004, p. 995). However, with time it is likely that ovary transplantation will become a clinical possibility. Considerations and concerns over the medicalization and commodification of reproduction, interpretations of reproductive rights and safety are just some of the key issues that need to be taken into account when evaluating ovary transplantation as a feasible medical procedure. I do not believe that any of the raised concerns should prove prohibitive in the future. While it may not become the most widely used method of assisted reproduction, it should still be an available option. If ovary transplantation is proven to be safe, I believe it will likely become socially and legally acceptable because it does not differ substantially from existing procedures.

References 1. American Fertility Society (1993). Guidelines for oocyte donation. Fertility and Sterility. p.59 (supplement 1) In: Anchor, J., A. Caplan and G. McGee. (1998). Moral Issues Pertaining to Oocyte and Embryo Donation. In: M.V. Sauer (ed.). Principles of Oocyte and Embryo Donation, New York: Springer.

www.bioethicsjournal.com

pbj 29

2. Anchor, J., A. Caplan and G. McGee. (1998). Moral Issues Pertaining to Oocyte and Embryo Donation. In M.V. Sauer (ed.). Principles of Oocyte and Embryo Donation, New York: Springer.

3. Caplan, A. (2004). Is Biomedical Research Too Dangerous to Pursue?; From; Caplan, A and McGee, G.; The Human Cloning Debate, 4th edition, Berkeley: Berkeley Hills Books 4. Childress, J. (1998). A principle-based approach; From: Kuhse, H and P. Singer; A Companion to Bioethics; Oxford: Blackwell publishers.

5. Donnez, J. et al.(2004,October) Live birth after orthotopic transplantation of cryopreserved ovarian tissue. Lancet.

16;364(9443) 6. Fox, R and J. Swazey. (1992).Chapter 4: Transplantation and the Medical Commons. In Spare Parts: Organ Replacement in American Society. USA: Oxford University Press

pbj 30

7. Jonsen, Albert. (2000). A Short History of Medical Ethics. USA: Oxford University Press.

8. Kass, L. (2004) The Wisdom of Repugnance: Why We Should Ban the Cloning of Humans; From; Caplan, A and McGee, G. (2004). The Human Cloning Debate, 4th edition, Berkeley: Berkeley Hills Books.

9. Lichtarowicz, A; Twin’s Ovary beats infertility. BBC news.

Retrieved 10/19/04 from http://news.bbc.co.uk/2/hi/health/ 3755250.stm 11/8/04 10. New Scientist. (2004, September 24). First Baby born after ovarian transplant. 14:16. Retrieved 11/8/04 from http:// www.newscientist.com/news/news.jsp?id=ns99996444 11. Powell, K. (2004, November). Age is no barrier. Nature, 432 12. The Practice Committee of the American Society for Reproductive Medicine. (October 2004). Ovarian tissue and oocyte donation. Fertility and Sterility, Vol. 82 No. 4

www.bioethicsjournal.com

Penn Bioethics Journal Vol. II, Issue 1 (2006)

The Body: From Part to Whole

Assessing the Ethicality of Pre-Implantation Genetic Diagnosis Beyond the Discourse of Eugenics Author: Faraz Siddiqui, University of Toronto Faculty Sponsor: Dr. Stuart J. Murray Abstract Pre-implantation genetic diagnosis (PGD) is often seen as the inevitable return of eugenics “through the back-door”. Recent advances in genetics have certainly resurrected the prospects of human artificial selection, but fundamental differences between the two in aims and ideology as well as methods and potentials render this label tenuous. This paper highlights these differences to challenge commonly applied similarities and calls for a re-examination of PGD beyond the nostalgic paranoia of eugenics.

Referring to PGD as eugenics is doubly disadvantageous. Firstly, the reminiscence it provokes of the Eugenics Movement restricts our discourse* when we assess the ethicality of the use of PGD and unnecessarily compromises an otherwise beneficial tool against genetic diseases. Secondly, only after we see beyond this discourse can we recognize and tackle the more realistic ethical issues of PGD. Such issues are assessed in this paper and their implications for bioethics are explored.

The term ‘discourse’ is used here in the Foucaultian sense to refer to any form of power that circulates in the social field and can attach to strategies of domination such as ways of thinking, speaking and writing as well as those of resistance.

*

Introduction The ideas of eugenics never really left the human fantasy. Many fear their resurgence within recent medical innovations in reproductive technologies (Kevles, 1995, p. vii). Scientific advances in genetic research may have brought greater knowledge of human reproduction, but it has also increased social prejudice against minority groups.

Science remains an elitist discipline and its empirical nature helps further personal prejudice. For example, during the 1970s, the Soviet intelligentsia proposed a form of “socialist eugenics,” where they claimed to be genetically superior and destined by DNA to rule over the dysgenics.

(McLaren, 1990, p. 9).

Faraz Siddiqui is a Junior at the University of Toronto and is double majoring in Health & Disease and Bioethics.

Email: faraz.siddiqui@utoronto.ca Dr. Stuart J. Murray is the faculty sponsor for this submission. He is a Social Sciences and Humanities Research Council of Canada (SSHRC) Post-doctoral Fellow, and a Lecturer in Philosophy at the University of Toronto.

Address: University of Toronto, 215 Huron St., Toronto, Ontario M5S 1A2 Email: stuart.murray@utoronto.ca Penn Bioethics Journal Vol. II, Issue 1 (2006)

The eugenist legacy also shapes the discourse around contemporary gene manipulation techniques. Embryo selection and prenatal screening are widely used treatment options that are simultaneously open to race and class bias and threaten commitments to social equality and reproductive rights. Consequently, leading bioethicists advocate extreme caution in their use in medicine. In the face of such potential “scientific racism,” can a case be made for pre-implantation genetic diagnosis? Any attempt to assess the ethicality of “modern eugenics” must be contrasted against the original movement it is often associated with, staying cautious not to let the nostalgic paranoia of the horrors of eugenics limit one’s discourse.

Towards a “better” society: eugenics in practice The second part of the nineteenth century saw great advancements in science and medicine. As confidence in science increased, scientists attempted to define more and more aspects of human life. Man had learnt to transform nature itself, and eugenics revitalized the long-standing debate of nature or nurture regarding human characteristics. In 1883, Britain’s Francis Galton coined the term eugenics as “the study of the agencies … that may improve or impair the racial qualities of future generations” (Galton, 1907, p. 17n). But apart from mere theoretical rhetoric, the Eugenics Movement advocated for public action in the form of legislation and control of human conduct, aiming to breed a better human species.

In its era and context, such an ambition seemed an authoritative enough good. Today however, eugenics is seen as the antithesis of bioethics—both the definition of the “better” and the methods employed to promote the “better” are considered unethical. Nevertheless, eugenics may not be discarded as mere idiosyncrasy. To assess it fairly, we need to understand what in its message made good sense to so many people, including its victims.

We see that eugenics originated in Britain and America as a result of the contemporary social, economic, and political environment. British eugenicists, for example were primarily concerned with classism and the threat of lower class “degenerates” while American eugenics developed in response to the post-Civil War socioeconomic problems that accompanied increased immigration and urbanization (McLaren, 1990, p. 9). Until the end of the nineteenth century, social Darwinism was trusted to purge the poor from the society. However, when it was suggested that the working classes contributed to most of the population

www.bioethicsjournal.com

pbj 31

growth, the affluent in society feared for their existence and demanded an increased government involvement.

Progressivists pushed forward the idea of scientific management: monopolizing the emerging science of genetics to eliminate a myriad of social problems of the inferior classes, thus saving “society” the high costs of maintaining them.

Scientific management consisted of positive eugenics, which encouraged the propagation of “desirable” traits, and negative eugenics, which ultimately acted to increase the number of desirable individuals by decreasing the rate of propagation of the undesirable traits of the inferior, using techniques like included “voluntary” or compulsory segregation and sterilization. Across the US, coercive laws banned marriage for people with mental illness, STD’s and even alcoholics. Over 20,000 Americans were forcibly sterilized by 1930 (Platt, 2003). As one would expect, negative eugenics served as an easy target for ethical arguments. Coercive sterilization and racial extermination to prevent “disease” or “undesirable” human traits turned supporters away from the movement. Its theoretical arguments also broke down when no one could biologically prove that one race of people could not do as well as another race under similar socioeconomic circumstances (McLaren, 1990). Instead, the opposite was proved— criminality for instance was shown to be wrongfully linked to the XYY genotype due to ascertainment bias (Gotz et al., 1999) or studies which drew subjects primarily from jail (Doran and Siminovitch, 1973). But perhaps the most ironic part of the Eugenics Movement was that it was scientifically unfeasible. Even the harshest forms of eugenics could not purge inherited diseases. Nonphenotypic heterozygous disease carriers could only be identified using universal screening, assuming that a genetic cause existed and was known. Mathematically, this meant that even deleterious autosomal diseases would decrease in frequency from 0.01% to 0.001% in a hundred generations, assuming zero mutation and migration (Guttman, 2003)!

Less obvious ethical problems with eugenics including the issues of social and psychological coercion as well as the subjectivity of the definition of “good” may have been carried over into modern reproductive technologies causing concern and controversy. Blame, guilt, and in Marxist terms, an ideologically constructed autonomy that nullifies self-determination while pushing forward the interest of others is a concern today too. Even if one could make autonomous decisions, one might reinforce socially existing (for example, sexist) ideas of the “good”1 or, within modern reproductive techniques, impose one’s own “good” on their children.

1

See Buchanan, 2000, Ch. 7

pbj 32

Towards making a case for PGD Whether or not the future of PGD will embrace eugenics, it certainly poses new questions and has unique implications and imperative for today’s society. PGD has clear advantages in preventing debilitating genetic disorders, but the threat of abuse is real. Even so, the nature of the ethical problems that do remain in PGD can hardly qualify it the “eugenics” label. Nevertheless, these ethical, legal, and policy issues deserve closer attention. The following sections will attempt to disintegrate the eugenics “baggage” that such an account usually comes with.

PGD has certain obvious technical improvements over eugenics. It offers a more neutral use of science because there is no impetus of racial hygiene. Also, it involves strong scientific proof of a direct causal relationship between the genes of interest and the disease to be prevented (Petersen, 2002, pp. 39-40). More importantly though, we see that as long as PGD is motivated by individual reproductive choice rather than state-backed coercion, it is free of negative eugenics.

Firstly, being carried out before birth,2 a Nazi-style racial extermination is no longer a concern. Secondly, any “negative” eugenics that can be carried out before implantation becomes a form of positive eugenics. At the preimplantation stage, for example, the moral duties of disease prevention are in practice interchangeable with those promoting a disease-free life. After all, gene technologists would prefer to implant a healthy embryo instead of having to manipulate and implant an unhealthy one. But without parental choice (in state-backed sterilization programs, for example) negative eugenics still exists, the subjects being the parents, not the embryo. The modern bioethicist should therefore focus on the potential for positive eugenics to assess PGD. We know that parental definition of the “good” is subject to subtle forms of coercion. Moreover, even if the choice was objectively “good,” it might not be authoritative enough to be imposed upon the child or on society over other types of good. We see, for example, that the flu shot is publicly promoted (a form of psychological coercion), and the suspected SARS patient is forcefully quarantined, but the autonomy of the prostitute is socially respected.

The first condition to make artificial selection of the “better” ethical is to make sure it is in the child’s best interest. Some health officials differentiate disease prevention, which is usually in the child’s best interest, from genetic enhancements, something that is often open to subjective notions of the “good”: Prenatal genetic diagnosis (PND), now used widely, calls for an abortion following unfavorable diagnosis. This is still murder to the anti-abortionist. PGD overcomes this ethical problem and, paradoxically for a scientific advancement, proves to be more inclusive of traditionalistic views. It is important to point out the moral improvements of PGD over PND. 2

www.bioethicsjournal.com

Penn Bioethics Journal Vol. II, Issue 1 (2006)

Assessing the Ethicality of Pre-Implantation Genetic Diagnosis Beyond the Discourse of Eugenics

We recommend … that the technique of preimplantation genetic diagnosis, which is currently restricted to serious diseases and disorders, should not be extended to include behavioural traits … such as intelligence, sexual orientation and personality traits … [since they seek] to identify … genetic predispositions for enhanced abilities or special character traits [as a basis for choice]. (Thomas, 2004, 13.78) In fact, it is in its potential for “designer babies” through non-clinical enhancements or as savior siblings that PGD finds the harshest criticism. Here, the good is influenced by factors other than the child’s best interest.

However, this criticism is unfounded and weak. Firstly, the potential for abuse of PGD is not sufficient reason to deem it as inherently unethical (the utilitarian effects of actions are not necessarily better than the Kantian intentions behind those actions). Secondly, genetic enhancements that parents might look for, such as intelligence and athletic abilities, are nearly impossible to locate in the genome.

Mark Hughes, a molecular geneticist from Wayne State University in Detroit talked of the impossibility that PGD could be used for desirable traits: Designer babies might be possible from a technological perspective, but biology is going to prevent it from happening. Most of these traits are controlled by multiple genes, making … an “optimal” gene combination nearly impossible from a statistical standpoint … [P]ublic policy [should] talk about what’s reasonable in the near term. (Landhius, 2004, p. 16) As for the technologically feasible enhancements such as sex selection, there might be medical, cultural, or even social reasons to PGD that do not lead to sexism or disruption of societal sex-ratios. John Robertson points out that PGD to choose a gender opposite to that of an existing child or children for a variety or “balance” in the gender of offspring might not be sexist (Robertson, J., 2005, p. 214-15). He further dismissed the worry that savior siblings might be instrumentalized as a means to the parents’ end or disregarded by the parents if the transplant fails. He argued that “couples who are willing to endure such costly and involved procedures … to save an ailing child are surely committed to being good parents to subsequent children” (Landhius, 2004, p. 14).

Assessing the ethicality and bioethical imperatives of PGD More subtle forms of coercion are at play within PGD. The definition of “coercion” is also important: the socialist includes coercion by socioeconomic constraints (Petersen, 2002, pp. 40-47)—most would be coerced against PGD3, but others may be coerced to undergo PGD because of an inability to care for diseased children. Arbitrating Penn Bioethics Journal Vol. II, Issue 1 (2006)

normality is another persisting source of concern. Parents’ conception of the “best” could be influenced by societal or by their own (at times, immoral) desires. (Buchanan, 2000, p. 179). They could impose their “good” on society and on their children in a paternalistic manner. More importantly, while the old eugenics is seen as imbued with political ideology and motivated by hate and fear, the new genetics might be driven by a combination of (1) market forces; (2) a vocation of biopolitics and “enslavement to expert opinion” (Rose, 1994, p. 54) or; (3) a discourse of risk.

Market forces: Economic realities, fiscal responsibility and “political reason” might all influence individual choices.

Market forces, it is suggested, might legitimize PGD in terms of the preventative benefits for the population as a whole (Petersen, 2002, pp. 40-47). As such, “parents might have a duty to ensure the best outcome for their offspring,” (Petersen, 2002, p. 51) to the point where, Crossley imagines, individuals are seen as irresponsible for not undergoing genetic tests where these are available (Petersen, 2002, pp. 63-64).

Vocation of biopolitics: An obligation to prevent disease, a duty to offer information to facilitate autonomy (because “the doctor knows best”), a duty to increase knowledge of risks of genetic disease and of one’s family history as an essential for prognosis, all demonstrate an everenclosing Weberian iron cage of biopolitics: The vocation of politics becomes a strange vocation of biopolitics by becoming a politics of the therapeutic, moving from leadership to bureaucracy to expertise over health and environment. Biopolitics requires not just expertise in service of desire; it also turns the social contract into … mass consent [to] expert [opinion]. “Code dependency,” in this sense, signals the necessity of seeing life [only] as inhering in a symbolic juridical order of biological processes … (Bradley Bryan, 2005, unpublished).

Discourse of risk: Discourses on risk both make possible (and are made possible by) diagnostic and screening technologies within the framework of governmentality.

These require the individual to adopt a calculative and prudent attitude with respect to risk and danger (Robertson, A., 2001, p. 300). As in other areas of life, this notion of risk, backed by statistical evidence, has become the common construct around which health in western society is described, organized and practiced, both personally and professionally (Robertson, 2001, p. 293).

3

For socialists, a truly liberal choice, in this case for PGD, is a right. But socioeconomic realities mean that not everyone will have access to these expensive technologies. This issue of social justice and a tiered healthcare is in itself an important one for bioethics.

www.bioethicsjournal.com

pbj 33

As for the question of the best interest, bioethicists are pessimistic about a clear-cut separation of disease from enhancements. Sometimes genetic dispositions, such as those for Duchenne muscle dystrophy do not always result in the disease. Others may have only speculative genetic causes. Conversely, genetic enhancements may at times be in the child’s best interest. A fair, blonde American child would fare better than a person of color—should selection for these traits not be justified? Sex-selection, as we have seen may be ethical for non-clinical reasons, depending upon the parental needs served and if they do not harm the embryo, the child, or society (Robertson, J., 2003, p. 214). But what constitutes as evidence of parental need? References of intention are usually too vague to be incorporated into public policy. Another problem for health administrators is the problem of defining a disease— this may also be subject to societal norms. For example, in the West, menopause is a disease which may be “treated” through hormone replacement therapies, but in the Orient it is a symbol of post-maturity that gives women freedom, independence and respect.

The vocation of biopolitics puts forth another question for health officials – how far can a government go in controlling public opinions? Can virtue override individual choices? When politically motivated Nigerians refused WHO’s polio vaccination plans resulting in multiple epidemics throughout the country, did WHO have moral authority over their decision? Even when individuals’ definition of the good coincides with that of the state, how authoritative is the good? Can the state control the use of PGD by influencing public conceptions of the good? Despite its exorbitant costs, should PGD be included in state health insurance? If not, its exclusive use could further stigmatize the diseased “have-nots.”

Many questions about the use of PGD remain. New clinical indications for PGD are emerging all the time, usually for specific diseases or cases that serve legitimate medical purposes, such as mutations for late onset disorders or susceptibility to cancer. The acceptability of non-medical screening will ultimately depend upon the interests served and potential harms to the child and society (Robertson, J., 2003, p. 216). In the UK, there has been ethical government support for savior siblings, using PGD to assure that a child’s blood is an HLA match with that of an existing child. But each new issue digs both sides further into their beliefs, prompting them only to redefine their boundaries. Supporters of PGD refuse to let

pbj 34

speculations about potential future abuses restrict the current ethical uses (Robertson, J., 2003, p. 214).

Opponents defy simplified heuristics for drawing moral lines (Buchanan, 2000, p. 202). Genetic counseling, invitro fertilization and PND did eventually find their way into society and are now generally used and accepted.

PGD however is likely to remain a small part of reproductive practice for some time to come.

Acknowledgements I would like to thank Ann Robertson for her class presentation on PGD, Abdullah Arain for his immense help in editing and proofreading, and Professor Stuart Murray at the University of Toronto’s Department of Philosophy for a remarkable course on the ethics of medical research.

References 1. Bryan, B. (2005). Introduction: The Strange Vocation of Biopolitics and the Example of Biotechnology, unpublished work presented for Ethics of Medical Research lecture, University of Toronto.

2. Buchanan, A. (2000). From Chance to Choice: Genetics and Justice. New York: Cambridge University Press.

3. Doran, T.A., & Siminovitch, L.B. (1973). The Antenatal diagnosis of genetic disease [videocassette]. Toronto: Division of Instructional Media Services, Faculty of Medicine, University of Toronto.

4. Galton, F. (1907). Inquiries into Human Faculty and its Development, New York: Dutton.

5. Gotz, M.J., Johnstone, E.C., & Ratcliffe, S.G. (1999). Criminality and antisocial behavior in unselected men with sex chromosome abnormalities. Psychological Medicine, 29(4), 953-62.

6. Guttman, D.S. (2003) Population Genetics. In lectures on Genetics, Dept. of Botany, University of Toronto.

7. Kevles, D.J. (1995). In the Name of Eugenics: Genetics and the Uses of Human Heredity, New York: Knopf.

8. Landhuis, E. (2004). Pre-implantation genetic diagnosis offers hope but prompts ethical concerns. Stanford Report, Mar. 3, 2004. Retrieved December 6, 2005 from http://newsservice.stanford.edu/news/2004/march3/invitro-33.html 9. McLaren, A. (1990). Our Own Master Race. Toronto: McClelland & Stewart Inc. 10. Petersen, A., & Bunton, R. (2002). The New Genetics and the Public’s Health. London: Routledge.

11. Platt, T., & LaPan, A. (2003). To Stem the Tide of Degeneracy: The Eugenic Impulse in Social Work. In Kirk, S. (Ed.), Mental Health and the Social Environment: Critical Perspectives (pp.

139-164). New York: Columbia University Press.

12. Robertson, A. (2001). Biotechnology, political rationality and discourses on health risk. Health, 5(3), 293–309.

13. Robertson, J.A. (2003). Extending preimplantation genetic diagnosis: medical and non-medical uses. J. Med. Ethics, 29, 213-216.

14. Rose, N. (1996). Governing ‘Advanced’ Liberal Democracies.

In Barry, A. et al. (Ed.), Foucault and Political Reason: Liberalism, Neo-Liberalism and Rationalities of Government (pp. 37-64). Chicago: University of Chicago.

15. Thomas, S. (2004). Genetics and human behaviour: the ethical context. Retrieved December 6, 2005 from http:// www.nuffieldbioethics.org/go/browseablepublications/ geneticsandhb/report_349.html.

www.bioethicsjournal.com

Penn Bioethics Journal Vol. II, Issue 1 (2006)

The Body: From Part to Whole

Emergency Contraception: Balancing a patient’s right to medication with a pharmacist’s right of conscientious objection Author: Hannah Shacter, University of Pennsylvania Faculty Sponsor: Dr. Judith Long Abstract Emergency Contraception (EC) is a safe and effective way to prevent pregnancy after having unprotected sex. Plan B, a form of EC, is 95% effective at preventing pregnancy when taken up to 24 hours after unprotected sex. Therefore, timely access to Plan B is key to its efficacy. Many pharmacists, however, refuse to fill prescriptions for EC due to their moral or religious beliefs. There is a growing conflict between the right of patients to receive timely access to their medications and the right of pharmacists to refuse to fill prescriptions to which they are morally opposed. Recent legislation on the state level has attempted to deal with the problem, but has not mitigated the conflict. Future policies must ensure that patients have access to their medications while still respecting the ethical concerns of pharmacists.

There are approximately three million unwanted pregnancies in the US each year (“Women’s Health Policy Facts,” 2005). The widespread use of emergency contraception (EC) could cut this number in half, reducing the number of abortions in the US by 700,000 annually (ibid.) In 1999 the FDA approved the use of Plan B (levonorgestrel), a progestin only pill, for emergency contraception (EC). Plan B has fewer side effects than other available EC options and according to the World Health Organization (WHO) has no contraindications (Weismiller, 2004). Plan B is so safe that in 2003 an FDA advisory committee voted 24-3 in favor of giving it over the counter (OTC) status (Wood et al., 2005). However, six years after its approval, Plan B is still not consistently available to women who need it. An ethical dilemma has arisen between women seeking timely access to their medications and phar macists and other health professionals who refuse to dispense EC for moral or religious reasons.

Hannah Shacter is a Senior at the University of Pennsylvania and is majoring in Biological Basis of Behavior.

Email: hannahs@sas.upenn.edu Dr. Judith Long is the faculty sponsor for this submission.

She is an Associate Professor of General Internal Medicine at the University of Pennsylvania.

Address: 1201 Blockley Hall, 423 Guardian Drive, Philadelphia, PA 19104 Email: jalong@mail.med.upenn.edu Penn Bioethics Journal Vol. II, Issue 1 (2006)

A regimen of Plan B consists of two tablets taken 12 hours apart. If started within 24 hours of unprotected sex, it is 95% effective at preventing a pregnancy. While it can reduce chances of pregnancy when taken as long as 72 to 120 hours after unprotected sex, its efficacy decreases significantly with time. The pregnancy rate of women who take Plan B 25-48 hours after unprotected sex is three times higher than those who take it in less than 24 hours. If taken between 49 and 72 hours, the risk of pregnancy is seven times higher (“Task Force,” 1998).

Plan B’s mechanism of action is similar to that of oral contraception and it should not be confused with the medical abortion pill mifepristrone (RU-486). Plan B can slow or even inhibit ovulation (Weismiller, 2004). This significantly decreases the chance of conception by decreasing the likelihood that an egg is available for fertilization. Plan B can also inhibit fertilization by interfering with the transport of sperm or the egg. If fertilization does occur, the medication can inhibit the transport of the embryo to the uterus. It is important to note that this has not lead to a higher rate of ectopic pregnancy in women who have used EC. Finally, EC has been shown to affect the endometrium, thereby impeding implantation (ibid.). As pregnancy is generally understood to begin after implantation, Plan B is considered contraception rather than abortion.

In what can be a race against time for women, there are several barriers to receiving Plan B or any other form of EC. First, in all but seven states, a woman must get a prescription from her doctor. Higher rates of unprotected sex can be expected on weekends and this is an especially difficult time to get in touch with a personal physician.

After obtaining a prescription for EC, the woman must get it filled. This has the potential of being the most difficult step in gaining access to EC. Many pharmacies do not keep Plan B in stock, but are able to order it from their distributor (Espey et. al., 2003; Van Riper and Hellerstedt, 2005). However, this can take up to or more than 24 hours, which must be added to the time it takes to get a prescription. Due to the time sensitivity of the regimen, this can prevent women from gaining timely access to EC and is therefore a de facto refusal to provide the medication. However, the greatest barrier to access can be the pharmacist. Some pharmacists refuse to fill

www.bioethicsjournal.com

pbj 35

prescriptions for EC based on their own moral or religious beliefs (Espey et al., 2005).

A pharmacist’s right to refuse to fill prescriptions is becoming an increasingly controversial issue. The American Pharmacists Association (APhA) states that: “a pharmacist places concern for the well-being of the patient at the center of professional practice,” (American Pharmaceutical Association, 1994). However, it also has a policy stating that it “recognizes the individual pharmacist’s right to exercise conscientious refusal,” (Dailard, 2005, p. 10). This allows pharmacists who are morally or religiously opposed to emergency contraception to stand by their beliefs by not participating in its distribution. However, because EC is so time dependent, the refusal to fill could be seen as in direct conflict with the well-being of the patient. This puts the APhA’s statements in conflict with each other.

The APhA has made provisions for this problem, suggesting that pharmacists who refuse to fill prescriptions should instead refer patients to a pharmacist who would be willing to provide the medication. The APhA “supports the establishment of systems to ensure patient access to legally prescribed therapy without compromising the pharmacist’s right of conscientious refusal,” (ibid., p. 10).

This does not, however, solve the problem. A pharmacist who morally or religiously objects to filling a prescription for EC might also object to assisting the patient in getting the prescription filled by someone else. Talking to the Washington Post, one pharmacist said: “That’s like saying, ‘I don’t kill people myself, but let me tell you about the guy down the street who does’,” (as noted in Sonfield, 2005, p. 9). An additional concern about conscience clauses such as the previously mentioned provision by the APhA, is that they leave a great deal of room for interpretation.

For example, a pharmacist who does not condone premarital sex could fill prescriptions for EC for women he or she knows to be married, while refusing it to those who are single. The line between conscientious objection and obstruction of medical care is not well defined, and these policies create a framework in which pharmacists could potentially do harm to their patients.

The conflict between pharmacists’ rights and patients’ rights regarding EC has also become a political issue. One debate is whether pharmacist refusals should be addressed at a state or a federal level. If policy regarding pharmacist refusals is kept only at a state level, EC could be a viable option in some places but not others. The Church Amendment of 1973, states that the government cannot force health care providers to assist in abortion if it is against their moral or religious beliefs (Sonfield, 2005).

As some interpret EC as a form of abortion, a federal law requiring all pharmacists to fill prescriptions for EC is unlikely. A federal decision to require pharmacies to fill all prescriptions is more feasible as it would leave room for individual pharmacists to refuse. However, the enforcement of such a policy could be difficult.

pbj 36

The recent FDA decision to deny Plan B OTC status may be political in nature. The FDA rejected the proposal after receiving overwhelming support from an FDA overview committee and its own staff. This decision shed doubt on the FDA’s status as a neutral scientific organization and led to the resignation of the assistant FDA commissioner for women’s health (Wood, 2005). Even OTC status, however, would not ensure access to Plan B as pharmacists could still refuse to stock the medication.

Presently there is no federal policy governing a pharmacist’s right to refuse to fill prescriptions. Policy on the state level runs from one extreme to the other. Four states (AR, GA, MO, and SD) give pharmacists the right to refuse to fill all contraceptives, including EC. Seven states (AK, CA, HI, ME, NH, NM, and WA) allow phar macists to distribute EC to women without prescriptions. Recently, Illinois enacted a law requiring all pharmacies carrying birth control to also dispense EC (Guttmacher Institute, 2005). Many other states have introduced bills to either enhance or restrict the right of phar macists to refuse to fill prescriptions. In Massachusetts, for example, the president of the Massachusetts Board of Registration in Pharmacy stated that all Massachusetts pharmacists are required to fill all valid prescriptions, and recent legislation will soon allow pharmacists to distribute EC to patients without a prescription, (Planned Parenthood Federation of America, n.d.).

There are many ways for pharmacists to avoid providing EC to patients, either by direct refusal or simply by not carrying the medication. As a result, patients seeking EC have limited options and face many obstacles. The government and the APhA must create more effective and consistent laws and policies to mediate this issue. The priority must be to ensure that patients’ needs are met.

However, the ethical concerns of pharmacists should also be taken into account as long as they do not conflict with the right of patients to receive timely access to their medication.

References 1. American Pharmacists Association (1994). Code of Ethics for Pharmacists. Retrieved 12/6/05 from http://www.aphanet.org.

2. Dailard, C. (2005). Beyond the Issue of Pharmacist Refusals: Pharmacies That Won’t Sell Emergency Contraception. The Guttmacher Report on Public Policy. August 2005, 10-12.

3. Espey E., Ogburn, T., Howard, D., Qualls, C, & Ogburn, J. (2003). Emergency Contraception: Pharmacy Access in Albuquerque, New Mexico. American College of Obstetricians and Gynecologists 102 (5), 918-921.

4. Guttmacher Institute (2005). State Policies in Brief: Emergency Contraception. Retrieved 12/6/2005 from http:// www.guttmacher.org.

5. The Henry J. Kaiser Family Foundation (2005). Women’s Health Policy Facts: Emergency Contraception. Retrieved 11/22/05 from http://www.kff.org.

6. Planned Parenthood Federation of America (n.d.). Summary of State Actions Related to Pharmacy Refusals. Retrieved 12/7/ 05 from http://www.plannedparenthood.org.

www.bioethicsjournal.com

Penn Bioethics Journal Vol. II, Issue 1 (2006)

Emergency Contraception: Balancing Rights 7. Sonfield, Adam (2005). Rights vs. Responsibilities: Professional Standards and Provider Refusals. The Guttmacher Report on Public Policy. August 2005, 7-9.

8. Task Force on Postovulatory Methods of Fertility Regulation (1998). The Lancet. 352, 428-433.

9. Van Riper, K. and Hellerstedt, W. (2005). Emergency Contraceptive Pills: Dispensing Practices, Knowledge, and Attitudes of South Dakota Pharmacists. Perspectives on Sexual and Reproductive Health. 37 (1), 19-24.

10. Weismiller, D (2004). Emergency Contraception. American Academy of Family Physicians. 70 (4), 707-714.

11. Wood, A., Drazen, J., and Greene, M. (2005). A Sad Day for Science at the FDA. NEJM. 353 (120), 1197-1199.

Penn Bioethics Journal Vol. II, Issue 1 (2006)

www.bioethicsjournal.com

pbj 37

The Body: From Part to Whole

Person in PVS: An Oxymoronic Bioethical Issue?

Author: Noah Sugerman, University of Pennsylvania Faculty Sponsor: Dr. Theresa Walls Abstract The 2005 legal battle over the fate of Terri Schiavo garnered intense media coverage and sparked a nation-wide debate over the so-called “right to life” of patients in a persistent vegetative state (PVS).

This paper explores the ethical side of the PVS issue.

After presenting the medical definition of PVS, as well as the diagnosis and prognosis of the condition, I investigate possible definitions of personhood and death in an attempt to discover whether or not Ms. Schiavo deserved full rights as a person. I then look at the arguments and reasons on all sides of the issue and examine the implications of choosing various definitions of personhood and death. Finally, I propose a possible solution to the ethical dilemma of PVS patients and analyze the effects such a solution would have on our society and morals.

Terri Schiavo spent the last 15 years of her life in a persistent vegetative state (PVS). On February 25, 1990, she suffered severe brain damage from cerebral hypoxia (a lack of oxygen to the brain) caused by cardiac arrest.

On February 11, 2000, a Florida circuit court ruled that Ms. Schiavo was in a PVS, and authorized her husband and guardian, Michael Schiavo, to remove the feeding tube that was keeping her body alive. Michael Schiavo contended that he was simply carrying out his wife’s wishes not to be kept alive in a persistent vegetative state.

However, Ms. Schiavo’s parents, Bob and Mary Schindler, disputed Michael’s contention that she would not have wished to be kept alive and claimed that she was not in a PVS. Her parents indefatigably appealed the judicial decisions, leading to the reinsertion of the feeding tube on two separate occasions.

During the last two weeks of Ms. Schiavo’s life, the legislative and judicial battles to disconnect her feeding tube generated tremendous media coverage and prompted a fierce debate over euthanasia, legal guardianship, and civil rights. But despite appeals and attemped judical action

Noah Sugerman is a Junior at the University of Pennsylvania and is majoring in Philosophy Email: sugerman@sas.upenn.edu

by the Florida state legislature, the governor of Florida, and the U.S. congress, the courts all ruled in favor of Mr. Schiavo, and the feeding tube was removed for the third and final time on March 18, 2005. Terri Schiavo finally died on March 31 (Quill, 2005).

Were the courts and Michael Schiavo justified in removing Ms. Schiavo’s feeding tube? In her persistent vegetative state, was she still a person who deserved all rights—including the right to life—afforded to her by our country’s consitution and moral codes? Or did the person Terri Schiavo actually die 15 years earlier leaving behind an empty body which continued to live? To begin to answer these questions it is necessary to explore the condition of PVS, the philosophical and ethical definitions of personhood and death, and the implications of choosing one of thse definitions to represent all human beings.

I. What is PVS and how is it determined?

Persistent vegetative state (PVS) is a medical term coined to describe a condition of “complete unawareness of the self and the environment” following severe brain damage. Clinically, patients in PVS exhibit sleep-wake cycles, complete or partial preservation of brain-stem autonomic functions (i.e. respiratory, cardiac, and metabolic functions), partial preservation of certain basic reflexes, and involuntary bowel and bladder function.

However, PVS patients show no sign of cerebral cortical function. This means that they appear to lack all awareness, are unable to interact with others, can produce no sustained, purposeful behavioral responses to visual, auditory, tactile, or noxious stimuli, and show no evidence of language comprehension or expression (The MultiSociety Task Force on PVS [MSTF], 1994, p. 1499).

However, because their autonomic brain functions are still operational, the majority of PVS patients require little more than artificial nutrition and hydration (i.e. a feeding tube) to live in this state for years.

The clinical diagnosis for PVS is made by observing the presence of all the above criteria after a given period of time (usually three to twelve months, depending on the mechanism of brain injury).1 According to the MultiThe Multi-Society Task Force on PVS states that recovery from PVS after 12 months is unlikely in patients who suffered traumatic brain injuries. In patients with non-traumatic injuries, recovery from PVS is rare after three months. There has never been a documented recovery from PVS in anyone after a period of two years (MSTF, 1994, p. 1572).

1

Dr. Theresa Walls is the faculty sponsor for this submission. She is a Lecturer in History & Sociology of Science at the University of Pennsylvania.

Address: 630 Apple Road, Lancaster, Pennsylvania, 17601 Email: theresa.walls@verizon.net

pbj 38

www.bioethicsjournal.com

Penn Bioethics Journal Vol. II, Issue 1 (2006)

Person in PVS: An Oxymoronic Bioethical Issue?

Society Task Force on PVS (1994), the sleep cycles and lack of behaviorally detectable awareness are the “distinguishing features of the vegetative state” (p. 1500).

However, other similar medical conditions such as coma, locked-in syndrome2, and brain death can obscure the diagnosis of PVS, leading to myriad legal and ethical implications.

Thankfully, with the advent of new methods of medical testing, physicians are now able to differentiate between many of these neurological conditions.

Electroencephalogram (EEG) and positron-emission tomographic (PET) tests show obvious discrepancies between brains in PVS, locked-in state, coma and those without function. (MSTF, 1994, p. 1502). Therefore, it is now possible to determine whether we are keeping a cognizant person alive or simply keeping a brain-dead body functioning. It is, according to Kenneth Schemmer (1989), a “welcome breakthrough” that “may provide us with our first truly ethical release from one aspect of the life-support dilemma.”

II. Who is a Person?

Classification as a “person” normally entails having strong moral rights and legal protections, and higher moral status than living things that are not classified as persons.

But who deserve these moral rights? Most would agree that animals, although living, should not qualify as persons.

However, does merely being part of the species Homo sapiens automatically entail the classification of person?

According to philosopher Mary Anne Warren (1996): [The] traits which are most central to the concept of personhood…are, very roughly, the following: 1. consciousness (of objects and events external and/or internal to the being), and in particular the capacity to feel pain; 2. reasoning (the developed capacity to solve new and relatively complex problems); 3. self-motivated activity (activity which is relatively independent of either genetic or direct external control); 4. the capacity to communicate, by whatever means, messages of an indefinite variety of types…; 5. the presence of self-concepts, and self-awareness.” (p. 436) However, a person does not necessarily need to possess all of these criteria to be labeled a person. Most people would agree that someone could lose his or her ability to communicate or perform self-motivated activity, but still remain the person that he or she was before. Yet, Locked-in syndrome, or midbrain death, is a rare condition characterized by the paralysis of all extremities and the inability to communicate orally. However, patients with this condition retain consciousness, cognition, and awareness (Rakestraw, 1992).

2

Penn Bioethics Journal Vol. II, Issue 1 (2006)

Warren seems to believe that reasoning is both a necessary and sufficient condition for personhood. This raises the intriguing possibility that some non-human animals like chimps and dolphins might qualify as persons, but also the disturbing implication that some human beings would not qualify, such as the severely retarded. In other words, if we set the bar as high as Warren has, we logically exclude many vulnerable human populations from the category of persons. So, when are we justified in saying a person has died, or rather is no longer a person? Perhaps the easiest way to view this bioethical issue is to look individually at some of the various possibilities for the definition of death.

III. Definitions of Death Many different definitions of death have been held by various people over time. Decomposition, which occurs when every last cell with a person’s DNA has died, is clearly a sufficient condition for the death, and few people still hold it a necessary part of death. Similarly, the cessation of cardiopulmonary function, which was, until recently, considered a sufficient condition for death throughout the world, seems insufficient today since cardiopulmonary resuscitation is possible even after breathing and heartbeat have stopped.

The loss of function of the entire brain is currently a sufficient condition for declaring a person to be legally dead in every U.S. state, and in most of the western world.

When the cardiopulmonary system of the body fails, brain death follows shortly thereafter, and it is this event, rather than the proximal causes, which signifies death. This standard, therefore, conveniently incorporates two common-sense aspects of the death of a person, “the irreversible loss of the capacity for consciousness and the irreversible cessation of integrated functioning of the organism as a whole” (McMahan, 1998, p. 252).

The idea of higher-brain death (neocortical death), such as PVS, has caused many bioethicists and philosophers to question whether whole-brain death is a necessary condition for the death of a person. If what really matters is the permanent and irreversible loss of consciousness, then in theory we could declare a person dead even if his or her entire brain was not dead. This view is consistent with the idea that a person’s life necessarily relies on his or her capacity for experience and thought (Perry, 2001).

IV. Arguments and Implications What if we were to change the legal definition for death from whole-brain death to higher-brain death? First, by this definition, human beings in permanent comas and persistent vegetative states would now be regarded as dead.

Proponents of such a change are quick to point out that organ procurement from PVS patients would greatly

www.bioethicsjournal.com

pbj 39

benefit those in need since the organs would be kept alive by the functionally intact body. Furthermore, estimates put the number of PVS patients in the U.S. between 15,000 and 35,000, and to liberate these patients from their insentient lives would save the U.S. between $1 and $7 billion in annual costs to keep them alive. This money, they argue, could be redistributed to help living sick people who really need the help (MSTF, 1994, p. 1576). Another result, that could have both positive and negative implications, is that a person who causes someone to enter PVS could now face charges of murder.

Opponents of the change to higher-brain death often point out that such a change puts us on a slippery slope that could lead to classifying advanced Alzheimer’s patients or severely demented individuals as dead simply because they lacked a “sufficient” cognizant capacity or awareness.

Additionally, they contend that changing the definition of death so that it applied to PVS patients would lead to burying live corpses that still had eye movements and a heartbeat. Opponents also argue that current knowledge of science and medicine cannot tell us whether or not a person is aware or self-conscious, and that we could be condemning thousands of self-aware PVS patients to death if we were to take away their rights as persons.

V. Another Option?

There is perhaps another way to view the situation while circumventing the confusions and worries. Although it is by no means exhaustive or complete, this proposed view may be a more practical method to adopt, especially in light of an inevitable clash between the two views of death. In this view, the definition of death need not be changed to encompass PVS patients; rather PVS patients would instead lose their classification as persons. As such, a patient in a persistent vegetative state remains undoubtedly alive, but they do not retain the moral or legal rights as a person—namely the right to life and those rights specified in the U.S. Constitution.

How does this view work in a practical sense? Quite bluntly, upon the irreversible loss of consciousness, awareness, and ability to experience, the person becomes a living human being without rights. The determination of irreversible loss of consciousness must be made with the most rigorous methods of diagnosis available, including EEG, PET and/or MRI scans, and must be made no less than six months after the initial loss of consciousness.

Upon diagnosis, the human being’s immediate family, guardian, next of kin, legal spouse, or legally appointed surrogate become the beneficiaries of the biologically living body. The owners of the being, however, have no duty to remove the living human being from life supporting measures. But, if they do choose to remove the living being from life support, they are free to do so without the

pbj 40

risk of legal repercussion or ethical uncertainty. The body is their property and they should be allowed to do with it whatever they see fit. If they choose not to remove the body from life support, they will then become responsible (if not already) for the cost of maintaining this living body.

If the living human being, prior to loss of personhood rights, was in possession of a living will (or advanced directive), this will must have legal authority over the decision of the owners of the living body. If the will states that the living being wished to remain on life-support even upon diagnosis of PVS, then life support cannot be discontinued. If, on the other hand, the living being explicitly stated that he or she did not wish to remain on life support, then life support must be discontinued, even though the living being has no current right to life, and even though the decision may be in conflict with the desires of the owners of the living being. In essence, this is analogous to a traditional will or bequeathal of property, which determines how the deceased’s assets (in this case the living body) are to be dealt with. The question of who is responsible for the cost of maintaining a PVS patient who wishes to be kept alive when the surrogates are unable or unwilling to pay remains problematic and requires further analysis of all factors involved.

The beneficiaries of the former person can choose to donate the organs if they so choose, or simply to prepare the body for a funeral. It is crucial to note that in no way will a body with a heartbeat and breathing ever be “buried alive.” It is not the custom of our culture to bury live bodies, whether or not that body is also a person. Thus, it will be necessary to wait until the all biological functions cease before burial, cremation, or autopsy is permitted.

In response to the slippery slope argument, diagnosis of an Alzheimer’s patient or a severely demented person as unaware and unconscious seems inevitable in the course of the disease. At some point, these people really will be comparable to living human beings in PVS, and once this lack of awareness is medically deter mined to be equivalent, they too will lose their recognition as persons.

While this is surely sad, it is by no means wrong to apply the same standards to different medical conditions. Both result in lack of cognitive abilities and thus lack of personhood.

VI. Conclusion Losing the distinction as a person does in no way lead to a certain death of biological body. By taking away the rights of the tens of thousands of PVS patients, we are simply entrusting their rights to capable decision makers (the surrogates) and allowing these surrogates to choose what to do with the living body. The acknowledgment of the loss of personhood serves only to differentiate between

www.bioethicsjournal.com

Penn Bioethics Journal Vol. II, Issue 1 (2006)

Person in PVS: An Oxymoronic Bioethical Issue?

the types of human beings who can cognize and experience the world from those who cannot. Those who cannot perceive, cognize, or possess awareness of their world are lacking in a certain aspect of humanness that we hold as being central to personhood. On a theological level, this seems consistent with the soul leaving the body.

Without the soul, should we be required to apply the same rights to an empty body?

Returning to the case of Terri Schiavo, it is obvious that under this view no moral or ethical crime was committed. After being in a PVS for 15 years, Terri Schiavo (assuming her diagnosis was correct) had long ceased being a person: her body was merely being kept alive by a feeding tube. At the initial diagnosis of PVS, her husband, as the appointed surrogate, was free to make the decision he deemed fit, and this decision should have been enacted immediately without question or appeal.

Since Ms. Schiavo left no living will, there was no way to determine what she wanted done in this situation. However, the disagreement between Ms. Schiavo’s parents and her husband over the proper course of action in no way affects

Penn Bioethics Journal Vol. II, Issue 1 (2006)

Terri Schiavo the person, who had long departed this world and was in no way involved in the situation.

References 1. McMahan, Jeff (1998). “Brain Death, Cortical Death, and Persistent Vegetative State,” in A Companion to Bioethics. Eds. Singer and Kuhse. (pp. 250-260).Oxford: Blackwell.

2. Multi-Society Task Force on PVS (1994). “Medical Aspects of the Persistent Vegetative State.” The New England Journal of Medicine. Vol. 330, No. 21. and No. 22.

3. Pence, Gregory E. (2004). Classic Cases in Medical Ethics 4th ed. New York: McGraw-Hill.

4. Perry, David L (2001). “Ethics and Personhood: Some Issues in Contemporary Neurological Science and Technology.” Santa Clara U. Retrieved 25 April 2005. <http://www.scu.edu/ethics publications/submitted/Perry/personhood.html>.

5. Quill, Timothy E. (2005). “Terri Schiavo—A Tragedy Compounded” The New England Journal of Medicine. 3 pp. 24 March. <www.nejm.org>.

6. Rakestraw, Robert V (1992). “The Persistent Vegetative State and the Withdrawal of Nutrition and Hydration.” Retrieved 25 April 2005. (pp. 389-405.) <www.bethel.edu/~rakrob/files/ PVS.html>.

7. Schemmer, Kenneth (1989). Between Life and Death: The Life Support Dilemma. Wheaton, IL: Victor Books.

8. Warren, Mary Ann (1996). “On the Moral and Legal Status of Abortion.” Biomedical Ethics. 4th ed. Ed. T.A. Mappes and D. DeGrazia. (pp. 434-440). New York: McGraw-Hill.

www.bioethicsjournal.com

pbj 41

BioethicsJournal Penn The nationâ&#x20AC;&#x2122;s only peer-reviewed undergraduate bioethics journal Call for papers Volume II, Issue 2:

Bioethics Without Borders Spring 2006 publication Recommended Topics International health policy Allocation and distribution of health resources Vaccine development Medical ethics in times of war Clinical trials in foreign countries Other types of borders: urban/rural divides, cross-disciplinary bioethics issues

Cash prize for top submissions See page 2 & www.bioethicsjournal.com for more information

Final Deadline: March 30, 2006

www.bioethicsjournal.com pbj 42

www.bioethicsjournal.com

Penn Bioethics Journal Vol. II, Issue 1 (2006)

The Body: From Part to Whole

Members of the Penn Bioethics Journal Board (2005-2006) Faculty Advisors Connie Ulrich, RN, PhD Paul R. Wolpe, PhD Associate Editors Ian Barrett Claire Chang Erin Cho Chava Cogan Rogette Esteve Sheri Halpern Benjamin Himes Lauren Hurwitz Stephanie Joco Ramya Mishra Rajini Murthy Bo Peng Charles Robinson Jules Shen Victoria Tsai Kavita Vinekar Associate Publishers Katryn Bowe Rachel Han Bo Peng Jennifer Rha Jules Shen Kavita Vinekar Webmaster and Webmistress Annafrancesca Fusch Xin Luo Managing Editors Katryn Bowe Rachel Han Justin Masterman Jennifer Rha Alix Rogers Executive Editor and Publisher Andrew J. Rosenthal

Penn Bioethics Journal Vol. II, Issue 1 (2006)

www.bioethicsjournal.com

pbj 43