Volume I Issue i

The Brain and Beyond...

Hope and Autonomy in the Context of Heart Transplantation Author: Kaveh Ardalan, University of Virginia Faculty Sponsor: Margaret E. Mohrmann, M.D., Ph.D. Abstract This article describes and problematizes the relationship between hope and autonomy. The author’s conversations with health care professionals and observations of patient-professional interactions throughout the course of a Fall 2004 clinical bioethics internship at the University of Virginia hospital provide the basis for the analysis and conclusions drawn. The author argues that the clinical experience of hope is not morally neutral. Specifically, experiences of hope and exercises of autonomy are often closely linked and in tension with one another. At the very least, false hopes should not be encouraged. However, even realistic hopes have ethically murky implications for autonomy. The negotiation of hope and autonomy should be considered a central issue in patient-professional relationships.

A Note On Methods: This article about the ethics of hope and false hope among patients waiting for heart transplants at the University of Virginia (UVA) hospital is based on the author’s experiences as a biomedical ethics intern during the Fall 2004 semester. The author observed the interactions between patients and various health care professionals (e.g. physicians, nurses, social workers) and these observations form the basis of the analysis in this article. While no formal interviews were conducted, the author has also incorporated conversations with professionals at the UVA hospital into this article’s conclusions. All names in this paper have been changed in order to protect confidentiality; the substance of any cases cited nevertheless remains intact.

Kaveh Ardalan is a Senior at the University of Virginia and is majoring in Human Biology.

Email: ka5a@virginia.edu Margaret E. Mohrmann, M.D., Ph.D. is the faculty sponsor for this submission. She is the Harrison Medical Teaching Associate Professor of Pediatrics, an Associate Professor of Religious Studies, and an Associate Professor of Medical Education at the University of Virginia.

Address: Program of Humanities in Medicine, PO Box 800761, University of Virginia, Charlottesville, VA, 22908

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Defining and Describing Hope: Hope is not merely an emotion, but also an emotional attitude. An emotional attitude can be understood as a way of ordering the world with respect to one’s own values.

From this perspective, emotion is not just a feeling but also a construction of a worldview. Just as one’s values may change over time, emotional attitudes such as hope may change over time. Regardless of the changes that hope undergoes, it consists of at least four basic components: 1) desires; 2) a belief that what is hoped for accords with one’s values; 3) the notion that what is hoped for is actually attainable; 4) and actions designed to encourage and sustain hope and achieve its desired end (Simpson, 2004, 428-432).

Imagination and uncertainty are also tied to hope.

The hopeful individual must be able to conceive of a world that is different from the current one but, by hoping for the imagined change, is open to disappointment due to the fact that future events are as yet unknown. The imagination in hope is tied to reality; one cannot realistically hope for unrealistic outcomes. The imaginative process and, more generally, hope itself are often collaborative processes by which people imagine alternative situations together, sharing and shaping ideas. Individuals may imagine best-case scenarios and worst-case scenarios alike.

“Opportunities to speak with others with one’s condition or illness” constitute one way in which people imagine and hope collaboratively (Simpson, 2004, 432-438). Joyce Willig, the first successful liver transplant recipient in the state of Connecticut, points out this collaborative dimension when she says “I try to give them [those waiting for transplants] hope and promise, to draw them into my miracle, to show them that there can be a world beyond pain and fear” (Saft, 1992, New York Times, pg A1).

Expressions of collaborative imagination and hopefulness were on full display at a support group meeting for those who had received or were awaiting heart and lung transplants at the UVA hospital. The patients at the meeting vigorously encouraged one another to hold on, gave narrative accounts of health and sickness, traded advice on medical issues as well as matters of personal and spiritual importance. The net effect was that all who attended were able to draw inspiration from one another.

While collaboration seems beneficial in this case, it can bring up issues that complicate traditional notions of individual autonomy in the healthcare provider-patient relationship.

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Hope, False Hope, and Autonomy: The following section is less concerned with offering concrete recommendations than with trying to get a sense of the ways in which hope can be ethically problematic in the first place. The nature of these problems is such that clear, concise routes of action cannot be given and a full account of possible responses to the ethical murkiness of hope would be beyond the scope of this work. The present goal is to shape a ‘moral space’ within which further ethical inquiry can proceed (Walker, 1993).

Healthcare providers often worry about maintaining a patient’s hope. For example, many doctors disdain “truth dumping”, a name given to disclosures of information that are complete, quick, and often follow stressful events such as surgery. Some doctors prefer that information be communicated in stages so that both the patient and the healthcare provider are spared excessive agony. Such negotiations about the rate at which professionals should disclose predictions about a patient’s future reflect anxiety over the balance between accurately communicating a prognosis while supporting hope (Christakis, 1999, 109).

These anxieties often surface in metaphorical or euphemistic language. For example, Richard Cunningham, a social worker at UVA hospital, once asked the attending physician Dr. Benway when he would “drop the bomb” on a patient—the “bomb” apparently referred to the demoralizing news that the patient needed to have a Ventricular Assist Device (VAD) installed in order to continue living and waiting for a heart transplant.

However, when healthcare providers worry about a patient’s hopes and grow too protective, false hopes may instead be outright encouraged as a way of guarding the patient or the provider (Simpson, 2004, 445-446). False hopes may consist of those hopes that are not realistically attainable (Simpson, 2004, 435). There are clear reasons to be concerned about false hope. Such unrealistic expectations undermine commitments to truth-telling in medicine and patient autonomy, both of which are based on the notion of respect for persons. The relationship between hope and autonomy merits further attention.

Autonomy springs from an individual’s liberty and agency and autonomous action consists of those actions that are intentional, performed with a sense of understanding, and executed without the undue influence of outside controlling influences (Beauchamp and Childress, 2001, 58-59). Beauchamp and Childress express skepticism over whether full autonomy is ever actually possible in our non-ideal world. However, they claim that some substantial degree of autonomy should underpin ethical interactions between healthcare providers and patients. Given these ethical guidelines and the fact that hope often functions as a way of limiting and organizing courses of action in accord with one’s own values, false hope may constitute a violation of individual autonomy.

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To the extent that hopes direct an individual’s actions, hopes should be rooted in the truth so that individuals assess and enact life plans that are in keeping with crucial realities.

False hope may provide a relatively clear case in which autonomy is limited by controlling influences. However, more realistic hopes may also limit autonomy in ethically pertinent ways. As discussed earlier, hope is often a collaborative endeavor. Healthcare providers, with their specialized knowledge and authority to estimate and deliver prognoses, are certainly a part of the negotiations that typify the construction and continuous reassessment of patients’ hopes. Physicians, nurses, and others may exert varying degrees of influence over a patient’s hopes. Since one of hope’s functions as an emotional attitude is to limit and order the world, it follows that healthcare providers shape the framework of hope within which patients exercise their autonomy.

Autonomy is predicated on agency, not necessarily on an unlimited variety of options. The options that an individual considers are limited by circumstances and possibilities as well as by the values and norms that the individual adopts. Hope is potentially ethically problematic because healthcare providers may partially dictate some of a patient’s decisions by unduly influencing the terms of decision-making from the start of medical care. The ethical issue at stake is whether or not the influence of physicians and other professionals is within the bounds of acceptable negotiations vis-à-vis hope or whether a line has been breached at some point, impairing the ability of the patient to seek out courses of action that accord with her values irrespective of the healthcare provider’s values. Hope seems to limit patient autonomy, but the degree to which this is ethically justified remains unclear.

Healthcare providers’ own hopes may actually limit patient autonomy to some extent as well. The effects of physicians’ hopes on patient autonomy often arise in the context of end-of-life decision-making. For example, Dr. Benway oftentimes seemed to have a rather optimistic— by some accounts triumphalist—outlook on his patients’ futures. Because he usually did not consider death as an option, his patients did not typically have an opportunity to initiate an early, honest discussion of the terms under which treatments would be discontinued. For example, one patient who was waiting for a heart transplant suddenly suffered a stroke that left him paralyzed on one side and medically ineligible for transplant surgery. Now the patient was unable to verbalize his wishes and the patient’s father stepped in as the surrogate decision-maker, but the father’s proposals often did not seem to make sense. For example, the father demanded withdrawal of care because he claimed his son would not want to stay alive if it meant being paralyzed; however, the fact that the son was fully conscious and that his degree of paralysis was not great

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Hope and Autonomy in the Context of Heart Transplantation

enough to be considered grounds for a declaration of medical futility cast doubt on the reasonableness of the father’s claims. Eventually a second stroke occurred that did result in a situation that could be deemed medically futile in regard to saving the patient’s life and the patient’s treatment was withdrawn. However, the interim time between the first stroke and patient’s death found Dr. Benway and the other members of the team in a position that lacked clarity regarding the patient’s own wishes. Dr. Benway’s high hopes for the patient, whose chances of successfully living until transplantation were not good from a medical standpoint, precluded an open discussion of end-of-life decisions and presumed the succession of one medical intervention after another until futility was so clearly demonstrated that no other option but the withdrawal of treatment was appropriate. In effect, the patient did not have a full array of possible courses of actions presented and his wishes may not have been known or ultimately respected. Usually ethicists fear that doctors have grown enamored with their own technological prowess and treat their patients too aggressively due to a sense of medical virtuosity. The irony in this situation is that Dr. Benway’s hopefulness and focus on the humanity and worth of the patient may have actually inhibited a full respect for the patient’s autonomy.

Penn Bioethics Journal Vol. I, Issue 1 Spring 2005

In closing, hope is an ethically problematic domain of the patient-provider relationship. On one hand, the experience of hope is a central and necessary element of the experience of sickness, healing, and wellness. On the other hand, the hopes of the patient and health care providers may generate subtle and ethically murky effects on the autonomy of patients who are especially vulnerable.

At the very least, the encouragement of false hopes should be avoided. However, the situation is complicated by the interplay and negotiation that occurs between a patient’s hopes and a healthcare provider’s hopes, with both individuals engaging in collaborative imagination. The line at the end of one’s hopes and the beginning of another’s autonomy is among the central contestable issues at stake in the patient-provider relationship.

References: 1. Beauchamp, T. F. and Childress, J. F. (2001). Principles of Biomedical Ethics, 5th ed. New York, NY: Oxford University Press.

2. Christakis, N. A. (1999). Death Foretold: Prophecy and Prognosis in Medical Care. Chicago, IL: University of Chicago Press.

3. Saft, M. (1992, March 15). Transplant Recipient Preaches Hope.

The New York Times, pg. A1.

4. Simpson, C. (2004). When Hope Makes Us Vulnerable: A Discussion of Patient—Healthcare Provider Interactions in the Context of Hope. Bioethics, 18:5, 428-447.

5. Walker, M. U. (1993). Keeping Moral Spaces Open: New Images of Ethics Consulting. Hastings Center Report, 23, no. 2, 33-40.

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The Brain and Beyond...

The Ethical Consequences of Modafinil Use Author: Molly Cahill, University Of Pennsylvania Faculty Sponsor: Rita Balice-Gordon, Ph.D. Abstract Modafinil is a stimulant that is beginning to receive attention in the United States because it lacks the negative physical side-effects of traditional stimulants. While these side-effects were an impediment to widespread use of stimulants such as amphetamines, there is no such barrier to widespread use of modafinil, and a country as chronically sleep-deprived as the United States could be extremely receptive to this drug. The possibility of widespread use of a neurocognitive enhancer such as modafinil raises many ethical issues. For instance, sleep-deprivation is a serious problem in the United States but a drug that appears to be a near-perfect treatment for sleep-deprivation may compromise personal autonomy. Also, as is the case with all neurocognitive enhancers, modafinil raises issues surrounding the United States’ cultural concept of pharmacological Calvinism, according to which drugs should only be used to treat or cure illness and disease. Modafinil highlights conflicts between cultural values concerning effort, success, and the role of pharmaceuticals in the United States that will have to be resolved for the drug to assume a role in society.

Imagine if there were a pill that could replace sleep.

It is hard to say if such a drug would be seen as a panacea by millions of chronically sleep-deprived Americans, or viewed with caution by a public wary of neurocognitive enhancers such as Ritalin and Prozac. This question may soon be answered as a drug called modafinil is on the verge of becoming the next pharmaceutical sensation.

Modafinil, marketed in America as Provigil by the firm Cephalon, causes a sensation of increased alertness and wakefulness. On modafinil, subjects in studies have demonstrated the ability to stay awake for periods of up to 64 hours with little or no decline in their level of cognitive performance (Baranski et. al., 1998). Perhaps the most counterintuitive aspect of modafinil is that it causes very little sleep rebound. Use of amphetamines and other traditional stimulants causes the user to need to “make up” for lost sleep. This occurs at a drastically lower level with modafinil (Legarde et. al., 1995).

Modafinil also differentiates itself from amphetamines

Molly Cahill is a Sophomore at the University of Pennsylvania and is majoring in Biological Basis of Behavior.

Email: mocahill@sas.upenn.edu Rita Balice-Gordon, Ph.D. is the faculty sponsor for this submission. She is an Associate Professor of the Department of Neuroscience at the University of Pennsylvania.

Penn Bioethics Journal Vol. I, Issue 1 Spring 2005

because use does not result in a “buzz” followed by a crash in mood and energy. Additionally, it avoids inducing tolerance or dependence (Bastuji and Jouvet, 1988).

Modafinil has been shown to be a cognitive enhancer.

The drug improves the ability of non-sleep deprived subjects on tests of basic cognitive skills, possibly by suppressing impulsive reactions (Turner et. al. 2003).

Such a drug seems too good to be true, and it well may be. While modafinil has very few side effects (nausea, anxiety, and headache are the most common), there are some known problems with its use. For instance, the drug significantly lowers the effectiveness of the birth control pill, making it untenable for millions of women in America. Any long-term ramifications that modafinil might have, particularly in regard to its ability to suppress the need for sleep, are unknown at this point, as is the exact mechanism of modafinil’s functioning.

In the 1980’s the French firm Lafon derived modafinil from an antidepressant. Professor Michael Jouvet, director of the laboratory that developed modafinil, has called the drug “a great French discovery” and remarked that not only has he taken it to increase his own productivity, but has seen it help students studying for their baccalaureate exams (Dorozynski, 1989). In 1998 the FDA approved Modafinil in the U.S. to treat narcolepsy and in 2004 expanded its approval to include shift work sleep disorder and sleep apnea/hypopnea syndrome. This increased the number of Americans with access to Provigil from 250,000 to over 20 million (National Center on Sleep Disorders Research, 2003). Usage of the drug is expected to rise as the FDA has approved the manufacture of modafinil by generic brands which can sell modafinil at lower prices. Obviously, in a country as over-worked and under-rested as the U.S., there is the potential for a booming modafinil black market. Cephalon already reports that 90% of the prescriptions written for modafinil are for off-label use, and this number will, in all likelihood, rise as awareness of the drug and its potential benefits increases (O’Connor, 2004).

In informed conversations about modafinil, people are always astonished to learn that there are no apparent side-effects to this drug. They insist that there must be a catch, and more than half decide that there is little chance that there are no side-effects, instead opting to believe that disastrous consequences will be discovered down the road. There is a deep-rooted understanding in our culture that supernaturally enhanced ability does not come without a price. Modafinil seems to offer many benefits with minimal physical cost, but the hidden cost of modafinil’s

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The Ethical Consequences of Modafinil Use

conferring superhuman powers could lie in unanticipated ethical side effects. Although discussion surrounding the public policy issues that neurocognitive enhancers like modafinil raise is interesting, the more difficult issues that sleep-preventing drugs such as modafinil raise concern what has been called “personhood and intangible values” (Farah et. al., 2004). These issues will mainly be faced by ordinary people in the course of daily life. For example, in a culture where sleep deprivation is a “serious public health problem” (National Center on Sleep Disorders Research, 2003) what effect will a drug that ameliorates the negative consequences of sleep deprivation have on personal autonomy? Modafinil also highlights conflicts between cultural values concerning success and effort that will have to be resolved for modafinil to assume a role in society.

What is fascinating scientifically about modafinil is its antagonistic effect on sleepiness. Almost because we don’t fully understand what makes it so necessary, sleep is regarded as an elemental bodily function. To have discovered a drug that allows sleeplessness with such minimal negative side effects is quite astonishing. What is fascinating ethically about modafinil is its power. The key to limitless productivity, energy, focus, and just plain feeling good every single day can now be found in 100-200 mg capsules of modafinil. The question is, how much of modafinil’s power will Americans be able to control and to what extent will modafinil have control over us?

As part of a backlash against the more paternalistic medicine of previous generation, the concept of personal autonomy has grown in stature in recent decades. The individual has been endowed with more right to choose her own course of medical action. In order to have autonomy one must have the liberty to choose and the agency to make that choice come about. Autonomous choosers make choices with understanding and without the influence of controlling outside forces (Beauchamp, 2001). The choice to use modafinil is made autonomously when the chooser sees modafinil as a road to selfimprovement that is compatible with her personal value system. This autonomy can be compromised by coercion, or “free choice under pressure” (Kramer, 1993) in the workplace or classroom. Because of the increase in productivity and energy that modafinil allows, if usage grows in the workplace employees could feel compelled to take modafinil in order to remain competitive. In this scenario, the cost of modafinil could be prohibitive to some workers, and this could reinforce or even enlarge the gap between the affluent and the working classes as those who can afford modafinil are better able to succeed in their jobs. This situation could also occur in schools as students who use modafinil appear brighter than those who do not, an inequity ever more likely as modafinil could be an approved treatment for ADHD as soon as Penn Bioethics Journal Vol. I, Issue 1 Spring 2005

2006. This would put pressure on employees, students, and parents to favorably consider the use of modafinil even if their personal value systems are opposed to its use.

An extension of the free choice under pressure scenario that could occur if off-label use of modafinil spreads is the concept of cultural addiction. Many Americans have lifestyles that demand the sacrifice of sleep. With modafinil, they may feel that their choice comes down to either struggling groggily through each day, or taking a pill that will enable them to feel awake.

Faced with this choice, it may be difficult for many people to make a decision about using modafinil as a neurocognitive enhancer that is based on their personal values. If modafinil comes to be seen as the only avenue to success or a tolerable life, under the free-choice-underpressure scenario, the autonomy of those using it would be compromised, and they could be seen as dependent on the drug. Modafinil obviously has the potential and power to compromise personal autonomy. It is up to each individual to examine modafinil critically in light of his personal value system, cognizant of outside forces that may make him want to take the drug in spite of personal ethical objections to it.

The decision whether or not to use modafinil rests heavily on the question of personal values, because this drug highlights two perpetually clashing yet both deeply ingrained American values. On one hand, Americans value success and making the most of oneself. On the other, Americans value hard work and the dignity it confers.

Many professional athletes face this struggle of values when deciding whether or not to use performance enhancing drugs. Sports ethics has condemned steroid use because it undermines the value placed on personal effort. However, professional athletes are under great pressure to achieve from coaches and fans. For those who choose to use performance enhancing drugs, the end goal of success is more important than any personal reward derived from working hard to achieve that success.

This is analogous to the situation created by modafinil, because Americans are under large amounts of pressure from bosses or teachers to produce, as well as from their families to be better at fulfilling familial roles. Modafinil could make it possible for people to be better employees, family members, friends, etc. in the end, but perhaps at the cost of the meaningfulness of the work one does to reach these ends. This is not to say that everyone will find work done while on a neurocognitive enhancer meaningless, and without the dignity of doing it the natural way. Everyone faced with the question of using modafinil will have to decide for herself, first whether she would feel that work done on the drug would lack in the meaning that she could find in doing the work in the harder way that she is used to. Secondly one must decide, if in fact

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The Ethical Consequences of Modafinil Use

work is seen as more meaningless when accomplished on modafinil, whether the end result of achievement and better fulfilling one’s roles in life is compensatory for the sacrifice of meaning.

Americans are wary of the amount of meaning that can come from work done on modafinil because of another cultural concept called pharmacological Calvinism. Peter Kramer defined this concept as “a general distrust of drugs used for non-therapeutic purposes and a conviction that if a drug makes you feel good it must be morally bad” (Kramer, 1993). According to pharmacological Calvinism, drugs should only be used for the purpose of curing or treating illness and disease. Neurocognitive enhancers are particularly subject to scrutiny by this cultural value because they raise questions about what constitutes an illness or disease. For instance, Cephalon’s website sells modafinil as treatment for “excessive sleepiness”, despite the fact that this is not commonly considered a specific medical condition and is not a condition that modafinil is FDA approved to treat. On one hand, excessive sleepiness is an unpleasant condition that many Americans may wish there were more help for. If excessive sleepiness were ever recognized as a condition in and of itself deserving of medical treatment, our culture might come to embrace use of modafinil for this purpose. On the other hand, pharmacological Calvinists fear that this could pathologize what is seen as normal sleeping time and daytime energy, and this raises difficult questions surrounding how much sleep and daytime energy is “normal”.

Neurocognitive enhancers are also subject to scrutiny by pharmacological Calvinists because they are seen as dehumanizing. Gerald Klerman, who first used the term, wrote that pharmacological Calvinists see pain and suffering as vital aspects of one’s humanity and that to absolve one of, for instance, the feeling of tiredness removes that vital aspect of humanity (Klerman, 1972).

Modafinil in particular is seen as dehumanizing in the way it seems to package productivity in pill form. There are limits, though, to how much this viewpoint of pharmacological Calvinism is accepted in America.

Americans have no qualms about taking an aspirin that will relieve the suffering from a headache, giving the user better thought clarity. This is analogous to modafinil as taking modafinil relieves the suffering of tiredness thereby

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lending the user better thought clarity. The distinction Americans make between what constitutes petty unnecessary suffering versus suffering that is an integral part of being human will play a major role in determining American attitudes towards modafinil.

Our culture’s pharmacological Calvinism could be the determining value that defines our society’s relationship with modafinil. However, sleep-deprivation is such an epidemic in this country and modafinil is such a nearperfect panacea physically, that pharmalogical Calvinism may not be as strong an impediment to drug use as it has been in the past. If off-label use of modafinil does start to spread, Americans may face a culture of coercion or even the specter of cultural addiction. Regardless of the autonomistic integrity of their decisions, Americans may soon have to decide one way or the other about modafinil.

Just as Ritalin and Prozac and other neuroenhancers reshaped cultural values, the decisions Americans make about modafinil will change our culture, redefining how we view effort and success.

References 1. Baranski, J. V., Cian, C., Esquivié, D., Pigeau, R. A., & Raphel,C. (1998). Modafinil During 64 Hr of Sleep Deprivation: Dose Related Effects on Fatigue, Alertness, and Cognitive Performance. Military Psychology, 10(3), 173-193.

2. Bastuji, H., & Jouvet, M. (1988). Successful Treatment of Idiopathic Hypersomnia and Narcolepsy with Modafinil. Progress in Neuro-Psychopharmacology and Biological Psychiatry, 12(5), 695-700.

3. Beauchamp, T. L., & Childress, J. F. (2001). Principles of Biomedical Ethics(5th ed.). New York, NY: Oxford University Press.

4. Dorozynski, A. (1989). Sleepless Pill. British Medical Journal, 298(6687), 1543-1544.

5. Farah, M., Illes, J., Cook-Deegan, R., Gardner, H., Kandel, E., King, P., Parens, E., Sahakian, B., Wolpe, P.R. (2004).

Neurocognitive Enhancement: What Can We Do and What Should We Do? Nature Reviews Neuroscience, 5(5), 421-425.

6. Kramer, P. (1993). Listening to Prozac. New York, NY: Viking.

7. Legarde, D., Batejat, D., Van Beers, P., Sarafian, D., Pradella,S. (1995). Interest of Modafinil, a New Psychostimulant, During a Sixty-Hour Sleep Deprivation Experiment. Fundamental and Clinical Pharmacology, 9(3), 271-279.

8. O’Connor, A. (2004). Wakefulness Finds a Powerful Ally. The New York Times, D1 and D6.

9. Turner, D. C., Robbins, T. W., Clark, L., Aron, A. R., Dowson, J., & Sahakian, B. J. (2003). Cognitive Enhancing Effects of Modafinil in Healthy Volunteers. Psychopharmacology, 165(3), 260-269.

10. National Center on Sleep Disorders. (2003). 2003 National Sleep Disorders Research Plan (NIH Publication No. 03-5209).

Washington, DC: U.S. Government Printing Office.

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The Brain and Beyond...

Wrongful Life and Wrongful Birth: Legal Aspects of Failed Genetic Testing in Oocyte Donation Author: Kristen N. Carey, Villanova University Faculty Sponsor: James McCartney, Ph.D.

Abstract The field of reproductive medicine has all but exploded in recent years, allowing more people access to novel treatments. New technologies have been introduced so rapidly that ethics and the law have been unable to respond appropriately. A particularly promising reproductive therapy, oocyte donation, and the wide variety of prenatal genetic tests already available, will theoretically present the legal world with a variety of new challenges. How should the law respond to potential wrongful birth and wrongful life suits resulting from failed genetic testing, if the child in question was conceived using a donor egg?

Under what circumstances should the physician be held liable? Under what circumstances might the donor be culpable? This paper reviews scholarly opinions and existing case law in order to answer these questions.

Introduction Developments in both genetic testing and reproductive medicine have been so rapid that ethics, public policy and the law have struggled to keep pace. Both technologies open the door for novel legal disputes. Thus far, there have been quite a few cases involving genetic testing and medical malpractice, some of which will be described in this paper.1 There have been relatively few court cases involving oocyte donation, as precedents stemming from both surrogacy and embryo freezing have provided relevant guidelines for oocyte donation (Bonnicksen, 2004, p. 157).2 McDonald v. McDonald (1994) has been the only case to date involving oocyte donation. The case concerned a divorced father attempting to gain custody of twins born using donated eggs. Although it has not yet happened, there is reason to believe that these two technologies may soon collide in the courtroom. A case involving genetic testing and donor eggs would be interesting for two reasons: it represents one of the first times a person other than the physician or the birth parents could be held liable for a wrongful birth or wrongful life suit, and it is a situation

in which birth parents have an unusual amount of control in the reproductive process, if given the proper information.

This paper examines the legal implications when genetic testing fails or is not performed, and a baby – conceived using donor eggs, is born with some handicap.

Should the parents and the child be able to file wrongful birth and wrongful life suits? As defined in Smith v. Cote (1986), wrongful birth claims are, “brought by the parents of a child born with severe defects against a physician who negligently fails to inform them in a timely fashion, of an increased possibility that the mother will give birth to such a child, thereby precluding an informed decision as to whether to have the child,” (Furrow, Greaney, Johnson, Jost, & Schwartz, 2001, p. 91). Wrongful life suits as defined in Smith v. Cote are filed on behalf of the child, “contending that the defendant physician negligently failed to inform the child’s parents of the risk of bearing a defective infant, and hence prevented the parents from choosing to avoid the child’s birth” (Furrow et. al., p. 91).

Thomas Burns (2003, p. 809) claims that many wrongful life suits are filed if the parents are deceased or otherwise unable to file a wrongful birth suit, or if the statute of limitations on wrongful birth expired. If a couple or a child can file a wrongful birth or wrongful life suit, does it make a difference that couples are involved in decisions about genetic testing? Should the donor be liable in such a suit if a child is born handicapped?

By reviewing the case law and opinions of leading legal scholars, I contend: Yes, parents should be able to file wrongful birth suits, if a clear breach of duty is determined on the part of the physician. However, if the couple was informed of a genetic test and chose not to pursue it, the physician is not liable. Children should also be permitted to file wrongful life suits under some circumstances. The egg donor is required to be completely

Kristen N. Carey is a Senior at Villanova University and is double majoring in Biology and Philosophy.

Email: kristen.carey@villanova.edu

1

See Safer v. Pack (1996) 291 NJ. Super. 619,677 A.2d 1188., Park v. Chessin. (1977). 400 N.Y.S.2d 110, and Curlender v. BioScience Laboratories. (1980). 165 Cal. Rptr. 477.

2

Bonnicksen cites Davis v. Davis, 1992 Tenn. Lexis 400; York v.

Jones, 717 F.Supp. 421 (E.D. Va 1989); In the Matter of Baby M, 537 A.2d 1227 (1988); Stiver v. Parker et al., 975 F.2s 261(6th Cir. 1992).

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James McCartney, Ph.D. is the faculty sponsor for this submission. He is an Assistant Professor of Philosophy at Villanova University.

Address: 800 Lancaster Rd., Villanova, PA 19085, attn/ Philosophy Dept.

Email: james.mccartney@villanova.edu

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Wrongful Life and Wrongful Birth

forthright in divulging her genetic information, and is only liable if she willfully withheld genetic information that reasonable persons would agree is vitally important.

Genetic Testing for Oocyte Donation When a couple considers conceiving a child, they are advised of a variety of genetic and prenatal testing. The couple is at liberty to request or forgo these tests. Couples often take advantage of genetic testing so that they can terminate the pregnancy, begin therapy or treatment if possible, or prepare for the reality of having a handicapped child. When the couple uses a donated egg, knowledge of its genetics becomes particularly relevant in making informed reproductive choices. Carson Strong (1996, p.

123-125) justifies genetic testing in gamete donation, asserting that it: 1) helps promote the autonomy of a couple’s reproductive choice, 2) allows for informed decisions, 3) prevents potential harm to the couple that may stem from the birth of a handicapped child, and 4) prevents harm to the potential child if he or she would suffer from a severe genetic disorder.

As oocyte donation has become a treatment of choice for many infertile couples, the need for genetic screening of these oocytes becomes obvious. In 1993, the American Fertility Society (AFS) established a set of guidelines meant to pre-screen potential oocyte donors (Strong, p. 123).

These guidelines recommended that any donor should be excluded if she or an immediate relative has a variety of genetic disorders (Strong, p.123). After the donor is accepted, a couple may choose her on the basis of her genetic profile (Strong, p.133). It does not seem unreasonable to allow the couple to request additional testing of the oocyte, or the donor, if the couple is concerned about the transmission of a specific genetic disorder, provided that the couple finances this testing, and it does not provide an undue burden to the oocyte donor.

Wrongful Birth and Wrongful Life Lawsuits The jurisprudence of wrongful birth and wrongful life suits has evolved since the 1960’s, when both claims were regularly denied. Wrongful birth suits began to be recognized in the 1970’s, with Becker v. Schwartz (1978); wrongful life claims gained their legitimacy with Turpin v.

Sortini (1982) (Burns, p. 810). The following sections examines the relevant jurisprudence in wrongful birth and wrongful life cases in general, then conjecture how this jurisprudence might apply in potential cases involving genetic testing and oocyte donation.

A. Wrongful Birth Smith v. Cote explained the criteria for determining the validity of wrongful birth suits: 1) the plaintiff must prove that the defendant was negligent in performing his defined duties towards her, and 2) the established breach Penn Bioethics Journal Vol. I, Issue 1 Spring 2005

of duty must also have a causative relationship to the injury (Furrow et. al., p. 92). The majority in Smith v. Cote notes, “this standard does not require a physician to identify and disclose every chance. . . of the occurrence of every possible birth ‘defect’” (Furrow et. al, p. 92). Rather, the physician’s actions should be evaluated against the standards of the medical profession.

The first traditional wrongful birth suit was Gleitman v. Cosgrove (1967). The plaintiff unsuccessfully claimed physician negligence in informing her of the possibility of harm to her fetus after she developed rubella in the second month of her pregnancy (Gletiman v. Cosgrove, p.

690-691). The court denied the claim on the grounds that the harm done was incalculable and “countervailing public policy supporting the preciousness of human life” (Burns, p. 814-815). An appeals court first allowed a successful wrongful birth suit in Becker v. Schwartz. This case was a “consolidated appeal,” including the prior wrongful birth suit of Park v. Chessin (1977). The Beckers sued for physician negligence in failing to advise her of the increased risk of Down syndrome in pregnancies of older women; Park’s suit involved erroneous counseling in advising of the transmission of a fatal polycystic kidney disease (Burns, p. 816). The court allowed for the recovery of specific damages only (Burns, p. 816). The Smith v.

Cote ruling was the first to allow compensation for emotional losses, provided they were “tangible,” and for “extraordinary parental care” (Furrow, et. al., p. 96). Like the plaintiff in Gleitman v. Cosgrove, Linda Smith had also contracted rubella in the second trimester of her pregnancy and had not been informed of the risk of carrying her fetus to term (Smith v. Cote, p. 128). Thus, the evolution of wrongful birth suits provides precedent for cases involving clear physician negligence.

B. Wrongful Life Courts have been even more wary of wrongful life suits, although there have been successful suits in California, New Jersey, and Washington. The jurisprudence governing wrongful life suits is much more varied than that of wrongful birth suits. The most common reason for denying wrongful life suits has been the nonexistence paradox (Burns, p. 817). In the Gleitman v. Cosgrove wrongful birth/wrongful life suit, the court argued that since the purpose of tort law is to restore the victim to his former state, tort law was insufficient in wrongful life suits: damages are “impossible to calculate” because the standard of comparison is flawed existence as compared to nonexistence (Gleitman v. Cosgrove, p. 692). “[T]he infant plaintiff is therefore required to say not that he should have been born without defects but that he should not have been born at all” (Burns, p. 811). Legal use of the nonexistence paradox correlates with extensive philosophical debate about the moral status of people who do not yet exist. Jan Neverson, Gregory Kavka, and Derek Parfit

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all discuss this problem under different names – the “nonidentity problem,” the “futurity problem,” and the “paradox of future individuals” (Heller, 2004, pg. 119). These scholars are wary of attributing dignity to hypothetical persons and are even more hesitant to assess harm done to these persons, in much the same way as the Gleitman court.

The nonexistence paradox was again famously stated in Becker v. Schwartz, then cited in Smith v. Cote. Although the aforementioned 1978 Becker v. Schwartz wrongful birth decision was successful, the court denied their wrongful life suit, reasoning that there was “no cognizable injury” under the law (Burns, p. 812). The court denied Smith’s wrongful life suit on the basis that it was not in the position to decide whether or not a person’s life is worthwhile (Furrow, p. 96). Berman v. Allen (1979), a wrongful life case also concerning a child born with Down’s syndrome, denied the claim, arguing the “sanctity of life should be preserved” (Burns, p. 817).

Curlender v. Bio-Science Laboratories (1980) paved the way for future wrongful life legislation in that the suit was successful, but the jurisprudence flawed. The Curlenders requested genetic testing on themselves to determine if they were carriers for Tay-Sachs. Yet when their daughter was born with the disease they sued their physicians, claiming the testing was negligently conducted (Curlender v. Bio-Science Laboratories, pg. 816). Curlender ignored the nonexistence paradox, focusing on the economic implications of being born with a genetic disease. The court allowed general, specific and punitive damages (Burns, p. 819). Curlender was precedent for three more successful wrongful life suits. The first, Turpin v. Sortini (1982) involved a couple who conceived two deaf children, whose condition was the result of a rare genetic disorder (p. 223). After conceiving the first child, the plaintiffs argued that their physicians should have warned them of the genetic basis of their daughter’s deafness, before they conceived their second child (Turpin v. Sortini, p. 223).

The court in this case argued that awarding a child damages does not correlate to value judgments on his or her life as compared to if he/she had never been born (Burns, p.

820).

In Harbeson v. Parke-Davis, Inc. (1983), the Washington Supreme Court did not negate the nonexistence paradox, but used it only to award the plaintiff “special” damages, including compensation for medical expenses (Burns, p.

821). Mrs. Harbeson was an epileptic who was prescribed the drug Dilantin during two of her pregnancies, both of which resulted in children with mental and physical disabilities (Harbeson v. Parke-Davis, Inc., p. 462-463). The last successful wrongful life suit of note, Procanik v. Cillo (1984), also involved a woman who contracted rubella during the first trimester of her pregnancy (p. 342). The Supreme Court of New Jersey ruled in that, “whatever Penn Bioethics Journal Vol. I, Issue 1 Spring 2005

logic inheres in permitting parents to recover for the cost of extraordinary medical care incurred by a birth-defective child, but in denying the child’s own right to recover those expenses, must yield to the inherent injustice of that result” (Burns, p. 821).

These three cases were “maverick” cases in wrongful life jurisprudence in that there is still considerable debate concerning the concept of wrongful life. Indeed, these cases should be considered historic, but not necessarily as setting a legal precedent. Today, prominent scholars argue both sides.

C. Wrongful Birth & Wrongful Life Cases Involving Genetics & Oocyte Donation.

Although there has not yet been a case of wrongful birth or wrongful life involving genetically defective donated oocytes, according to the above cases involving either misdiagnosis or faulty advice on genetic matters, it would seem that a physician would have a duty to warn his patients of risk factors and the availability of genetic testing to a degree of what “a reasonable person in the patient’s position would want to know” (Strong, p. 127).

A clear breach of duty could be established if a physician fails to offer a particular genetic test within the purview of the established minimum standard. Therefore, if a case arose involving a handicapped child born using a donated egg that had not been given adequate testing, there is clear precedent that the physician could be held liable.

However, there may be limits to physician negligence, even with a breach of duty. Physician liability in a wrongful birth suit would be questionable if the genetic disorder of the plaintiff was an adult-onset disease. Strong argues that if would be difficult to prove economic harm – the most common claim in wrongful birth suits – in such a case (p. 131). Emotional harm would also be difficult to prove in a wrongful birth suit of this nature because courts would likely consider this harm “offset by the benefits of having a child” (Strong, p. 131). Strong contends that wrongful life suits in this instance are categorically inappropriate because most adult-onset genetic disorders do not make “nonexistence” preferable to the already lived life (p. 131).

There is a second limit to physician negligence relevant to all potential wrongful birth cases concerning genetic testing – including those involving donated eggs. Although most genetic tests are 90-95% accurate in diagnosing the existence of a genetic disorder, they are not entirely foolproof (Strong, p. 128). If a child is born with a genetic disorder after he or she had a prenatal test, the physician should only be held liable if he failed to administer the test correctly. The physician cannot be held liable if the test failed to work for reasons out of his or her control.

The aforementioned issues are all relevant in potential wrongful life suits involving donated oocytes. Because

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of the conflicted jurisprudence in wrongful life suits, any recommendation of liability in cases involving egg donation should be made cautiously. Carson Strong warns against wrongful life suits involving genetic abnormalities, arguing that there are only “rare” cases in which “abnormalities are so severe that it can reasonably be argued that nonexistence is objectively preferable to the life the infant would have” (p. 125). However, if the goal of wrongful life suits is to provide some compensation to the victims of negligent genetic counseling, then wrongful life suits may be appropriate as an alternative to wrongful birth suits because they have the same objectives (Burns, p. 808). Therefore, courts should allow either a wrongful life or a wrongful birth suit, but the two should never be used simultaneously.

The interesting twist in wrongful birth and life suits involving genetics and oocyte donation is that the couple is involved in making medical decisions. Hence, the onus of responsibility is largely on the couple, provided they have received standard genetic counseling. This introduces the possibility of a lawsuit by a child against his or her parents for wrongful life. In the past, courts have not ruled in the child’s favor in similar cases. Dorothy Wertz explains, “the availability of genetic tests must not be allowed to create an illusion that most disabilities are preventable and therefore unacceptable to society” (Ford, 2004, pg. 210). It would seem that a successful wrongful life suit against parents would be subject to a stricter standard of proof. A parent could be held liable if she were somehow responsible for causing a particular genetic disorder or otherwise acted in a manner that reasonable persons would deem irresponsible.

The use of donor eggs presents the potential for these suits to be levied against the oocyte donor for failing to provide accurate genetic information, although the onus again seems to fall on the couple because it makes the final decisions. However, if a donor’s conscious and willful failure to provide accurate genetic information is proven to directly influence a couple’s decisions in oocyte selection and genetic testing, then the donor could possibly face a wrongful birth or wrongful life suit.

Conclusion There is precedent for both wrongful birth and wrongful life suits involving genetic screening and oocyte

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donation. Either the physician or the donor could potentially be sued. If the suit indeed results from clear physician negligence, there is little that any public policy could do to prevent it. However, John Robertson (1996) argues that the “lack of legal infrastructure” in egg donation is problematic because couples cannot be certain about the legal ramification of utilizing this therapy (p.

14-17). Practices in oocyte donations vary across clinics and legislation is virtually nonexistent (Strong, p. 163).

Both Robertson and Andrea Bonnicken suggest that preemptive legislation be enacted to establish a minimum standard for genetic testing and a minimum standard of genetic information required of donors (Robertson, p.

186 and Bonnicken, 2004, p. 157). If these practices were streamlined, then couples, physicians, donors, and courts would be able to both communicate effectively and prevent future lawsuits.

References 1. Becker v. Schwartz. (1978). 46 N.Y.2d 401,411,386.

2. Berman v. Allen. (1979). 404 A.2d 8.

3. Bonnicksen, A. (1996). Private and Public Policy Alternatives in Oocyte Donation. In Cynthia Cohen (Ed.), New ways of Making Babies: The Case of Egg Donation (pp. 156-175).

Bloomington, IN: Indiana Univ. Press.

4. Burns, T. (2003). When Life is an Injury. Duke Law Journal, 52, 807-839.

5. Curlender v. Bio-Science Laboratories. (1980). 165 Cal. Rptr.

477.

6. Ford, N. Ethical Aspects of Prenatal Screening and Diagnosis.

In Gerard Magill (Ed.), Genetics and Ethics: An Interdisciplinary Study (pp. 197-216). St. Louis, MI: St. Louis Univ. Press.

7. Furrow, B. (2001). Bioethics: Health Care Law and Ethics. (4th ed.). St. Paul MN: West Group.

8. Gleitman v. Cosgrove. (1967). 227 A.2d 689.

9. Harbeson v. Parke-Davis, Inc. (1983). 656 P.2d 483.

10. McDonald v. McDonald. (1994). 196 A.D.2d 7; 608 N.Y.S. 2d 477.

11. Park v. Chessin. (1977). 400 N.Y.S.2d 110.

12. Procanik v. Cillo. (1984). 478 A.2d 755.

13. Robertson, J. (1996). Legal Uncertainties in Human Egg Donation. In Cynthia Cohen (Ed.), New ways of Making Babies: The Case of Egg Donation (pp. 175-188). Bloomington, IN: Indiana Univ. Press.

14. Smith v. Cote. (1986). 128 N.H. 231, 513 A.2d 341.

15. Strong, C. (1996). Genetic Screening in Oocyte Donation: Ethical and Legal Aspects. In Cynthia Cohen (Ed.), New ways of Making Babies: The Case of Egg Donation (122-138).

Bloomington, IN: Indiana Univ. Press.

16. Turpin v. Sortini. (1982). 643 P.2d 954, 966.

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The Brain and Beyond...

The Real Death of Vitalism: Implications of the Wöhler Myth Author: Anthony M. Cheng, University of Pennsylvania Faculty Sponsor: Paul R. Wolpe, Ph.D.

Abstract There is a tendency for extraneous issues to unnecessarily complicate bioethical debate. Vitalism is one of these topics. The implications of the Wöhler Myth, a popular account of science’s victory over vitalism, are examined descriptively and normatively: I reflect on how the Myth’s prevalence shaped the attitudes of science and religion and evaluate those attitudes.

Introduction According to a popular anecdote often told to introduce chemistry courses at universities, the birth of chemistry was the death of vitalism, a theory of life which posits the existence of two classes of metaphysically disparate matter. According to the theory, the matter which makes up living organisms is endowed with a vital force that is absent from the matter which makes up non-living objects. The two classes of matter can be referred to as “organic” and “inorganic.” Another facet of the theory is that organic matter can only be created by organic matter, since inorganic matter lacks the vital force needed for life.

Vitalism, as told by the legend, was overthrown by Friedrich Wöhler’s use of inorganic salts to synthesize urea, an “organic” compound. Since Wöhler started with inorganic materials, did not add a vital force, and yet was able to make an organic compound, it was reasoned that vitalism was false. This so-called death of vitalism is believed to have cleared the way for modern science. In fact, contemporary accounts do not support the claim that vitalism died when Wöhler made urea.

The Wöhler Myth, as historian of science Peter J. Ramberg calls it, originates from one account by Bernard Jaffe, the author of a popular history of chemistry in 1931 that is still in print today. “Ignoring all pretense of historical accuracy, Jaffe turned Wöhler into a crusader

Anthony Cheng is a Sophomore at the University of Pennsylvania and is majoring in Molecular Biology.

Email: amcheng@sas.upenn.edu Paul Root Wolpe, Ph.D. is the faculty sponsor for this submission. He is the Senior Fellow at the Center of Bioethics and an Assistant Professor of Psychology at the University of Pennsylvania.

Address: 3401 Market St, Suite 320; Philadelphia, PA 19104 Email: wolpep@mail.upenn.edu Penn Bioethics Journal Vol. I, Issue 1 Spring 2005

who made attempt after attempt to synthesize a natural product that would refute vitalism and lift the veil of ignorance, until ‘one afternoon the miracle happened’” (Ramberg, 2000, p. 170-195). Though today’s chemistry texts present variations of the story, including those that temper its claims that chemists have disproved vitalism, the story appears in one form or another in most texts.

Ramberg proposes compelling reasons for the prevalence of the story, but instead of discussing why the story is prevalent in the pedagogical tradition of chemistry, I will discuss the implications of the Myth’s prevalence. I propose that widespread belief in some form of the Wöhler Myth, or in the beliefs that surround it, contributes to an unnecessary opposition between science and vitalism which also puts science and religion in opposition.

A Brief History of Vitalism Humans have been grappling with the questions of vitalism since the beginning of civilization. What is the nature of that which is “living”? Is the material that makes up living beings inherently different from the material that makes up non-living things? Do we have souls?

At least as early as the Greek philosopher, physician and poet Empodocles (504 to 443 BC), there have been coherent philosophies to answer these questions.

Empodocles proposed that the essence of life is from ether, “a subtle fire existing from all eternity and present in air and all matter” (Haller, 1986, p. 81-88). Vitalism was first challenged by the emergence of philosophies like Descartes’, which extend a mechanistic explanation of natural phenomena to organisms. Descartes’ philosophy included a mind-body dualism, however, and a metaphysical soul is an important element. A more extreme mechanistic view in the form of radical materialism has been posited since then which utterly excludes the soul from existence.

Even with the emergence of a new materialist paradigm and the emergence of modern science in the sixteenth and seventeenth centuries, however, vitalism continues to have its constituents. Nineteenth century vitalists include Henri Bergson and the famous embryologist Hans Driesch.

The philosophical dialogue continues today, but some scientists, perhaps raised on the Wöhler Myth and encouraged by the fact that vitalism has fallen out of favor among modern philosophers, are confident that scientific knowledge is outmoding vitalism (Bechtel & Richardson, November 15, 2004, n.p.). Francis Crick addressed the

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vitalist with supreme confidence: “And so to those of you who may be vitalists I would make this prophecy: what everyone believed yesterday, and you believe today, only cranks will believe tomorrow” (Crick, 1967, p. 99).

Some such scientists argue that a metaphysical belief such as vitalism can be overturned by scientific experimentation, just as it was in the Wöhler Myth, and they are on something of a crusade against vitalism. Crick believed that “[…] the motivation of many of the people who have entered molecular biology from physics and chemistry has been the desire to disprove vitalism” (p. 24).

Is Vitalism Really Dead?

Vitalistic beliefs persist for reasons that do not appear to be subject to changes in scientific knowledge, as is proposed in the Wöhler Myth. Studies show that children hold vitalistic beliefs. When asked to explain how we get energy in one study, 85% of the children responded using a vitalistic explanation (Kayoko & Hatano, 2004, p. 356362). It seems that such early beliefs must influence future learning and it is possible that even scientific knowledge gained in future learning is absorbed in the framework of vitalism.

Historically, even scientists have not universally accepted the death of vitalism. Since the beginning of modern biology, there have been those who see in the increasing complexity of our understanding of life a multiplication of ways for vitalism to fit into our beliefs.

Lord Kelvin, who penned one of the first versions of the second law of thermodynamics, wrote that, “The influence of animal or vegetable life [vital energy] on matter is infinitely beyond the range of any scientific enquiry hitherto entered upon” (MacFie, 1912, p. 228).

The layman has given credit to such views. In fact, the public has embraced one scientist’s work to prove the existence of a soul and consequentially to prove the validity of vitalism. The conclusion of a 1907 study by Dr. Duncan MacDougall has gained the cultural prominence of an urban legend, stated in the tagline of a 2003 movie 21 Grams: “They say we all lose 21 grams at the exact moment of our death” (Focus Features, November 16, 2004, n.p.). MacDougal measured the weight of patients when they were dying and reported a sudden decrease in the weight of patients at the moment of death. From his data, he concluded that there is, in fact, a soul substance essential to the body in life and in the form of “gravitative matter” (Haller, 1986, p. 81). That is, there is a soul of determinate weight that departs at the moment of death.

Numerous criticisms can be (and have been) made against his methods and his conclusions, but it is significant, nonetheless, because it demonstrates that vitalism is not a dead system of belief among scientists or by lay people.

Scientists may want to seriously consider Kelvin’s warning and ask if vitalism is even a scientific question.

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Even in a hypothetical future when we have an immaculately detailed knowledge of the functioning of our bodies, there may still be no way to absolutely prove or disprove vitalism. What experiment could be devised to prove that a rock, which is ostensibly inorganic, has no poetic spirit which would manifest lyrical words if given a set of vocal cords or a way to write?

Religion Engaging the Myth For those religions in which there is life after death, there must be something of the body which is not bound by the natural laws of science. Vitalism is a theory which allows for the existence of a soul, so concepts of Western theism are often inherently vitalistic. On the other hand, biological science involves the mechanization of natural processes. Scientists observe, quantify, and theorize explicitly within the confines of natural law. If there is allowance for phenomena outside those confines, one might believe that the scientist’s pursuit is undermined.

Vitalism and science may be incompatible. Thus, science and religion can position themselves in direct opposition.

The Wöhler Myth encourages this opposition, which has manifested itself in a struggle over intellectual authority in society. Religion and Science are now in opposition over how people understand life.

Religious groups have engaged in this debate. The Catholic Church explicitly invokes science to support vitalism: The Instruction, a church decree, states that ‘“Certainly no experimental datum can be in itself sufficient to bring us to the recognition of a spiritual soul’, […] but science gives us ‘a valuable indication’” (Coughlan, 1990, p. 67). The Church uses this vitalism as the basis for important doctrines regarding issues such as abortion.

The Church’s acceptance of the scientist’s belief that vitalism can be proven or disproved is dangerous and unnecessary: Dangerous because beliefs of faith should be independent of proof or scientific validation; unnecessary because theistic beliefs are concerned not with the material nature of the universe but with the spirit “behind and beyond” the universe (p. 169). That is, even a mechanistic universe could have been created by a godly mind. Essentially, the question of vitalism is a metaphysical debate outside the realm of and unanswerable by science, contrary to the Wöhler Myth. Religion need not oppose science on this question.

Likewise, science need not engage in the debate.

Science gains its authority from its coherent explanations of obser vable phenomena. Vitalism deals with unobservable phenomena and so the fields of science and vitalism do not intersect. Further, science provides tangible benefits in the form of improvements in health treatments, which gain the trust and acceptance of society.

This is empirically verifiable since biomedicine’s paradigm of health and body is so pervasive.

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Practical Implications If vitalism has no philosophical implications for religion or science, does it have implications for society’s conduct? One might think that the tension between materialism and vitalism could have importance due to its relationship to free will: If we are purely mechanistic beings, are we really not free to make choices? If not, what are the consequences? In fact, there are no practical implications in the framework of free will that hinge on vitalism. If we accept materialism and we accept that we have no soul, nothing changes. Our lives will still be marked by “[…] thoughts, feelings, hopes, confusions, moral dilemmas, aesthetic experiences, and episodes of dark doubt and deep faith” (Eccles, 1984, p. 48).

Common sense might also suggest that beliefs about vitalism would have importance regarding controversial bioethical questions. One might think that, for example, if someone believes an embryo has a soul, they might also be likely to be against abortion. This claim can be evaluated empirically. A possible approach is to use the research methodology of Robert A. Embree who attempted to correlate “mind-body” beliefs with stances on elective abortion (Embree, 1998, p. 1267-1281). Using a modified version of his method, a possible correlation could be investigated between a subject’s beliefs about vitalism, attitude toward abortion (prochoice or antichoice) and beliefs about the meaning of abortion (murder or not murder).

A possible correlation between vitalistic belief and an individual’s stance on bioethical issues does not mean that vitalism ought to have implications in the modern debate in bioethics, however. Take the American abortion debate, for example. One would be making an unsound judgment if he or she thought that abortion could be decided by a proof or belief in vitalism. Validation of vitalism might separate living and nonliving matter onto separate moral planes, justified by the presence or absence of a vital force, but whether or not the embryo is living is not a question in debate. The embryo is undeniably living, as is a hair follicle. Opposition arises here when the relative moral worth of the embryo in the context of the mother’s rights and responsibilities is questioned. This salient question would not be resolved by an answer concerning the vitalism debate.

The debate about embryonic stem cell research is another case. Perhaps scientists believe that a materialistic world-view would lead to societal acceptance of the sacrifice of embryos for the sake of research. If there is no vital force, all matter is the same in essence. The sacrifice of embryos for research, then, would not be a violation of morality since “killing” the embryo is merely

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the disassembly of atoms and molecules. Research could then proceed. This would be an untenable conclusion.

Would murder then be on the same moral plane as smashing a rock? In a society, it could not be so. We assign moral worth to things regardless of their metaphysical status. Even in the absence of a vital force, we would be left struggling with the same task of deciding the morality of sacrificing embryos.

The Real Death of Vitalism Logically, vitalism is ultimately not a question of great consequence, and yet there are vehement beliefs on both sides. This can be explained in part by the opposition between science and religion fostered by the Wöhler Myth.

Since vitalism and religion are so closely tied, the Wöhler Myth arranged science and religion antagonistically. This antagonistic relationship, perpetuated by the Wöhler Myth’s distortion of the importance of the vitalism debate, has resulted in a great deal of unproductive debate. Vitalism ought not to have practical implications in religion or in societal conduct. Care should be exercised to ensure that vitalism is not used as a surrogate to address questions of bioethics or intellectual authority. Its debate belongs in the realm of the philosopher of metaphysics and outside the realm of common discourse. This, perhaps, should be the real “death of vitalism.”

References 1. Bechtel, William and Robert C. Richardson. Vitalism. In E. Craig (Ed.), Routledge Encyclopedia of Philosophy. London: Routledge. Retrieved November 15, 2004, from http:// www.rep.routledge.com/article/Q109.

2. Coughlan, Michael J. (1990). The Vatican, the Law and the Human Embryo. Iowa City: University of Iowa Press, 67, 169.

3. Crick, Francis. (1967). Of Molecules and Men. Seattle: University of Washington Press, 24, 99.

4. Eccles, Sir John and Daniel N. (1984). The Wonder of Being Human. New York: The Free Press, 48.

5. Embree, Robert A. (1998) Attitudes toward Elective Abortion: Preliminary Evidence of Validity for the Personal Beliefs Scale.

Psychological Reports 82,1267-1281.

6. Embree, Robert A. and Marlowe C. Embree. (1993) The Personal Beliefs Scale as a Measure of Individual Differences in Commitment to the Mind-body Beliefs Proposed by F.F. Centore.

Psychological Reports, 73, 411-428.

7. Focus Features, “21 Grams” http://www.21-grams.com (accessed November 16, 2004).

8. Haller, John S. Jr. (1986). The Great Biological Problem: Vitalism, materialism, and the philosophy of organism. New York State Journal of Medicine 86(2), 81-88.

9. Kayoko Inagaki and Giyoo Hatano (2004). Vitalistic causality in young children’s naive biology. Trends in Cognitive Sciences, 8(8), 356-362.

10. MacFie, Ronald Campbell (1912). Heredity, Evolution, and Vitalism: Some of the discoveries of modern research into these matters – their trend and significance. New York: William Wood and Company, 228. The brackets were inserted by MacFie. 11. Ramberg, Peter J. (2000) The Death of Vitalism and the Birth of Organic Chemistry. Ambix, 47(3),170-195.

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The Brain and Beyond...

Ethical Implications of Pharmacological Enhancement of Mood and Cognition Author: Michael F. Esposito, University Of Pennsylvania Faculty Sponsor: Paul Root Wolpe, Ph.D.

Abstract With advances in the molecular biology of neuroscience, there is an increased understanding of neurotransmitter systems and the biological basis of memory and mood. This has lead to the research and development of highly selective drugs that serve to alter the brain for treatment and enhancement.

Many ethical concerns arise about the use of pharmacological agents to alter the brain solely for enhancement. Safety, alteration of personhood, distributive justice, and the medicalization of the human condition will be discussed. However, the potential to increase one’s memory and efficiency in the workplace, to eliminate socially undesirable behaviors, and to strengthen the military provides a strong argument in favor of pharmacological enhancement. In conjunction with the ethical concerns, this paper explores recent research and current and developing drugs, ultimately arguing that pharmacological enhancement is acceptable as long as certain policies are implemented.

Most of us have, at some point in time, attempted to control or alter our mood or cognitive functioning.

Whether it be sipping coffee in the morning to wake up, devouring chocolate as a pick-me-up, or drinking alcohol to become relaxed and sociable, humans constantly introduce foreign substances into their bodies to achieve a desired state of mind or level of performance. In the past, society relied on chance for the development of these substances (Farah & Wolpe, 2004, p. 40). For example, an antihistamine drug candidate happened to calm schizophrenics and an antipsychotic drug candidate happened to be a better antidepressant (Farah & Wolpe, p. 40). However, molecular neuroscience has increased our understanding of neurotransmitter systems as well as the biological basis of memory and mood, which has led to the creation of drugs that are highly selective and

Michael F. Esposito is a Junior at the University of Pennsylvania and is majoring in Biology.

Email: mesposit@sas.upenn.edu Paul Root Wolpe, Ph.D. is the faculty sponsor for this submission. He is the Senior Fellow at the Center of Bioethics and an Assistant Professor of Psychology at the University of Pennsylvania.

Address: 3401 Market St, Suite 320; Philadelphia, PA 19104 Email: wolpep@mail.med.upenn.edu

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created for a specific purpose (Farah & Wolpe, p. 41).

Currently, many promising drugs have been created for the specific treatment of Alzheimer’s disease (AD), Schizophrenia and middle-age / elderly cognitive decline, yet many of these drugs also improve cognitive functioning and mood of non-afflicted individuals (Wolpe, 2002, p.

388). Thus, one must consider that psychopharmacology could be used to enhance the brain of individuals who are not clinically ill. Since the brain is the biological foundation of who we are, many ethical concerns arise regarding the use of drugs to alter the brain solely for enhancement (Farah & Wolpe, p. 35; Farah, Illes, CookDeegan, Gardner, Kandel, King, Parens, Sahakian, Wolpe, 2004, p. 423). Concerns about safety and personhood arise, in addition to concerns about coercion, distributive justice, and the medicalization of the human condition.

On the other hand, imagine the potential to eliminate socially undesirable behaviors, increase efficiency in the workplace, and increase one’s memory. Moreover, in our society one must not overlook the personal freedom to choose to utilize, or not utilize, the latest technology.

By familiarizing ourselves with recent research and current and developing products, and examining the ethical reasons in support for pharmacological enhancement, personal and societal objections to it, and respective counterarguments to the objections, phar macological enhancement becomes more apparently ethical and should be allowed, given that vigilant policies are implemented.

However, some questions must be addressed and definitions presented in order to fully understand this debate.

For clarification, ethicist Paul R. Wolpe asks: How does one differentiate between the terms “treatment” and “enhancement (Wolpe, p. 388)?” It could be said that treatments remedy the sick, those below average, the subnormal. Enhancement is then the improvement of individuals who are not sick, those who are average, normal (Wolpe, p. 388-90). One could argue that no individual is “normal” and thus pharmacological intervention can be considered treatment, potentially eliminating the controversy of enhancement. As one can imagine, a deep philosophical discussion could pursue because one would then need to define “normal” and “average” in order to differentiate these terms (Wolpe, p. 388). Furthermore, who is responsible for formulating the definitions? For example, in most Western societies, traits that are deemed

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Ethical Implications of Pharmacological Enhancement of Mood and Cognition

valuable, such as happiness, are normal, well, and accepted and any increase in such a trait would be considered enhancement. Traits that people want to do away with, such as criminality or depression, are usually characterized as illnesses or subnormal and can be “treated (Wolpe, p.

388).” Any definition of “normal” will fail to be universal because it is the result of compromised values which are culturally derived and influenced by particular societies (Wolpe, p. 390). Thus, for this discussion, enhancement shall be defined as improving the psychological functions of individuals who are not clinically ill, as defined by medical specialists. Furthermore, cognition shall be defined as thinking skills that include perception, memory, awareness, reasoning, judgment, intellect, and imagination.

Mood shall be defined as a psychological state of feeling.

Exploring the present state of research gives the context needed for further understanding the debate.

Current research targets enhancers for mood, memory and executive functions, sleep, libido, and appetite (Farah et al, p. 421). Although military and private research for cognitive and mood enhancing drugs is ongoing, “smart pills are not around the corner (Hall, 2003, p. 56).” They are years away from government approval but several are in clinical testing or are under development (Hall, p.

57). In fact, several drugs that target other cognitive functions are currently available including Dextramphetamine for wakefulness, Adderall and Ritalin for increased attention and working memory, and Modafinil for wakefulness, increased attention, and alertness (Hall, p. 60-2; Turner, Robbins, Clark, Aron, Dowson, Sahakian, 2002). Also, Donepezil, Rivastigmine, and Galantamine have been shown to prevent cognitive deterioration and slow memory loss in AD patients and show neuroprotective effects over the long term (Hall, p.

56). Moreover, drugs like Selective Serotonin Reuptake Inhibitors (SSRI), such as Prozac, exist to reduce negative moods and increase affiliation behavior without serious short-term side-effects (that cannot be treated with other drugs) (Farah & Wolpe, p. 41). And with the help of molecular biology in understanding and identifying neurological processes, novel approaches are being implemented to create new drugs for treating diseases and enhancement (Farah & Wolpe, p. 41). Drugs are being developed to target the initial cascade for memory by utilizing ampakines to initiate long-term potentiation which is implicated in memory formation (Farah & Wolpe, p. 42). In addition, MEM1414, a CREB enhancer, targets the CREB gene with the intent of enhancing memories (Farah et al., p. 422; Hall, p. 62, 64-5). Benzodiazepines and CREB suppressors are under development to repress traumatic memories (Farah & Wolpe, p. 42; Hall, p. 62, 64). With additional research, drugs are becoming increasingly selective and risk-averse (Farah & Wolpe, p.

41). Thus, current drugs that exhibit effective treatment Penn Bioethics Journal Vol. I, Issue 1 Spring 2005

of clinical ailments and developing drugs that show promise are becoming increasingly suitable for enhancement.

Aside from solely understanding the promising laboratory tested effects of current drugs, there are numerous ethical reasons in support of pharmacological enhancement. Living in an increasingly skill-driven and socially interactive society, one must be focused and have an efficient memory to be successful (Rose, 2002, p. 975).

Ritalin and Adderall are two drugs that enhance attention and improve performance in problem-solving and other tasks requiring the executive function use (Farah & Wolpe, p. 42). Those who are average or below average for certain memory tasks may find these drugs helpful in advancing careers, making a better living, or surmounting careerthreatening circumstances. Furthermore, drugs, like Donepezil, could be used as a prophylactic (Farah & Wolpe, p. 41). Donepezil slows memory loss in AD patients and could be used to slow age-related gradual cognitive decline that ultimately affects everyone, thus improving the quality of life as one matures (Hall, p. 63). In addition, several careers could benefit from enhancement—society could have safer flights, safer medical encounters, and a stronger military (Wolpe, p. 392; Hall, p. 57, 60).

Society could further benefit from pharmacological enhancement if it is implemented in the criminal justice system (Farah, 2002, p. 1125). For instance, although controversial in its own right, convicts could potentially be sentenced to take enhancement medications in order to suppress further devious, criminal behavior. Some may object to forced medication, but anti-androgen drugs are already used to treat convicted aggressive persons (Farah, p. 1125-6). Allowing convicts the choice of either medication or jail time may be as effective and less controversial. In addition, enhancement could serve as an equalizing force in society (Farah et al., p. 423). It has the potential to eliminate inequalities accumulated in other sectors of society. For example, in a cognitive test, a poor education could be augmented with brain enhancing medication.

Understanding the objections to pharmacological enhancement of cognition and mood is important in this debate and further enables one to formulate counterarguments to these objections. These objections and counter-arguments can be separated into issues users face and issues society face. Issues that individuals face include the concept of personhood; many believe that it is unnatural to modify the brain. Furthermore, it is argued that people are characterized by their cognitive abilities and by altering the brain one alters the person’s values, moods, and perspectives and ultimately that person becomes unrecognizable to others (Farah & Wolpe, p. 36, 43; Farah et al., p. 423-4). Although valid, this argument is not sound and as Arthur Caplan explains, people who

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make this argument have modified themselves in some other way, using eye-glasses, artificial hips, electricity, and automobiles (Caplan, 2003, p. 105). Also, do people not drink alcohol and caffeine, take Ritalin and Prozac, and use nicotine or even marijuana to alter their cognitive states (Wolpe, p. 388)? Enhancement via “drugs” is already a part of life (Farah & Wolpe, p. 41). There is already a general acceptance of other enhancement techniques like cosmetic surgery in addition to non-neuroscientific cognitive interventions like meditation and psychotherapy.

Could using pharmacological enhancers help individuals attain self-actualization rather than assuming that the individual is being altered?

Another moral issue is the belief that people should earn their achievements, the colloquial “no pain, no gain” argument. Leon Kass, a member of President Bush’s Bioethics Panel, states that achievements via drugs are equivalent to cheating (Hall, p. 57). It is further argued that accomplishments are meaningful because of the effort put forth and that reducing effort will reduce meaning (Farah & Wolpe, p. 43). But who says that taking cognitive enhancing drugs reduces effort? Individuals still need to take time to learn information, although the effort may be more concentrated, efficient, and less time consuming.

In addition, is the meaning of the experience of walking a few miles lost just because someone drives to work everyday and never walked such a distance? That person still understands the meaning of walking and can imagine how difficult it would be to walk such a distance everyday.

Although common to bioethical debates, an individual’s safety is an important issue here as well. When manipulating very complex systems like the brain, there is great risk of serious and unanticipated side-effects, especially in the long-term (Farah et al., p. 423; Farah, p.

1125). Perhaps taking memory enhancers will lead to unforeseen premature cognitive decline (Farah et al., p.

423). Additionally, enhancers may affect the selectivity of neurological processes, enhancing traumatic memories and unimportant details that are supposed to be forgotten.

When one process is targeted, other processes may be affected and unexpected linkages may arise (Wolpe, p.

393). For example, an enhancer may increase memory but negatively impact mood and attention. In an experiment in which mice were given a memory-enhancing drug, they experienced increased sensitivity to pain in addition to better memory (Wolpe, p. 393). There are many risks and unknowns that seem frightening. However, continual improvement has yielded newer, increasingly specific and safer drugs with fewer side-effects (Farah & Wolpe, p. 41). For example, SSRIs used as antidepressants are specific to mood (Farah & Wolpe, p. 41). They have very good safety records and even exhibit neuroprotective effects over the long term (Farah & Wolpe, p. 43).

Although some may have side effects, like Prozac causing Penn Bioethics Journal Vol. I, Issue 1 Spring 2005

Erectile Dysfunction (ED), other specific drugs used in conjunction can treat the side effects, like supplementing Prozac with Viagra to treat ED (Farah & Wolpe, p. 41).

So long as research continues to reduce risk and Phase Trials prove promising, enhancement will be increasingly tolerable and acceptable.

Implicit coercion is another concern regarding enhancement. Since enhancement could increase the quality of executive functions, employers may be enticed to hire individuals with greater skills and increased efficiency while those who are not enhanced will be at a disadvantage (Farah et al., 422; Farah, p. 1125). Thus, there may be a feeling that if everyone else is enhancing their brain, others will be left behind if they fail to do so.

Although decision-making should be free from coercion, one should realize that self-improvement is commendable in Western society and many religions even preach that it is a person’s moral obligation to improve one’s self and one’s children (Caplan, p. 105). Thus, there should be policies created that minimize implicit coercion so that individuals can exercise their freedom to choose based on their values, free from coercion.

Although issues individuals face are important to consider, so too are issues that society faces. Explicit coercion may arise in the workplace or in the academic arena. For example, employers could require employees to enhance their efficiency through pharmacological means in order to maintain their jobs; competitive preparatory schools and universities may require their students to enhance their cognitive functions so as to be the most competitive institutions (Caplan, p. 104-5).

Although one can argue that the market-driven society is competitive and promotes improvement, accepting the possibility of explicit coercion is turning a blind eye to ethics and acquiesces to the pressures contributing to inequality (Caplan, p. 105; Dees, 2004, p. 952). Yet, one cannot simply outlaw pharmacological enhancement without infringing on personal freedoms and equality since these same drugs used for enhancement would be allowed for treatment (Farah et al., p. 423). Instead, it is important to have laws and regulations extended to guarantee individuals the right not to enhance themselves without being discriminated in the social and economic sectors of society. With proper laws and regulations to manage this rising technology, society can help guarantee free choice and fair access. This, too, is true when considering distributive justice. Because access to drugs has a clear economic factor, there tends to be an unequal distribution of drugs among different socioeconomic classes (Farah et al., p. 423; Farah, p. 1125). The cost barriers compound the disadvantages of the lower class by restricting access.

We already live with inequalities in society where the upper and middle classes can afford the latest advancements in health, yet the government does not restrict access because

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of inequity (Farah et al., p. 423). Once again, society must not deny enhancement because it is not equally accessible, but rather address the gross inequalities of society due to other factors and in turn grant fair access for all classes.

When considering how enhancement drugs affect society, one must examine the possibility of creating more lifestyle drugs. Pharmacological enhancement could potentially raise the standards of being “normal” and variants of human behavior could be medicalized (Flower, p. 183). For example, if most people enhance their mood by taking Prozac, then “happy” becomes “normal.” Thus those who do not take Prozac and are not perfectly “happy” are considered subnormal and medically “sick.”

In medicalizing human behavior, society changes the “complaints of the healthy to the conditions of the sick” and in doing so, alters the definitions of competence, illness, mental health, and death, ultimately changing the moral and legal understanding of accountability and responsibility (Flower, p. 183). Imagine the impact this would have on the criminal justice system. If committing crimes are abnormal and this behavior is eliminated in individuals who enhance, such behavior could potentially be perceived as sickness and consequently, criminals may not be held accountable for their actions. Although valid, I contend that lifestyle drugs already exist (Ritalin in academics and Viagra enhancing libido) as evident in a $20 billion market (Hall, p. 65; Flower, 2004, p. 182).

Medicalization has already occurred with mild depression and social anxiety. In fact, with medical advancement, research for therapies leads to inevitable enhancement and medicalization. Society welcomes advancement in technology in which individuals are capable of adjusting in such a dynamic society without terrible consequences.

Based on this, society will likely adjust accordingly in the future when new pharmacological agents are introduced as evidenced currently with Viagra and Ritalin.

Neuroscience and molecular biology are amazing fields of study that hold great promise for future pharmacological treatments. Ethical concerns about morals, safety, personhood, coercion, distributive justice, and the medicalization of the human condition are all noteworthy and invaluable in this bioethical debate.

However, with the potential benefits of future and developing drugs, the increasing selectivity that they exhibit, the decreasing potential risk they pose, and the consideration that we live in a competitive market-driven

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society, enhancement is increasingly acceptable and will likely be greeted with open arms—but not without some skepticism. Furthermore, it is imperative to create advisory and regulatory panels to devise regulations on the ethical use of enhancement drugs and to decide which ones are acceptable. Additionally, it is important to have legislatures create laws that would limit any injustices or coercion that might transpire. Furthermore, the criminal justice system should continue to use pharmacological enhancement with novel drugs but only on a voluntary basis and as an alternative or supplement to incarceration.

Obviously, many additional questions arise in this debate. For instance, what will be each party’s role (Farah et al., p. 424)? Will physicians still act as gatekeepers? Will parental consent uphold? How will employers and educators be affected? Ultimately, further discussion is necessary to answer these and other questions that arise in this debate.

Acknowledgements The author thanks the reviewers and editors for their helpful comments and suggestions on a previous draft, Paul R. Wolpe and Eric S. Hintz for their sponsorship, and Kathleen M. Sullivan for comments and support.

References 1. Caplan, A.L. (2003). Is Better Best? Scientific American, 289, 104-105.

2. Dees, R.H. (2004). Slippery Slopes, Wonder Drugs, and Cosmetic Neurology: The Neuroethics of Enhancement. Neurology, 63 (6), 951-952.

3. Farah, M. J. (2002). Emerging Ethical Issues in Neuroscience.

Nature Neuroscience, 5 (11), 1123-1129.

4. Farah, M., Illes, J., Cook-Deegan, R., Gardner, H., Kandel, E., King, P., Parens, E., Sahakian, B., & Wolpe, P.R. (2004).

Neurocognitive Enhancement: What Can We Do and What Should We Do? Nature Reviews Neuroscience, 5, 421-425.

5. Farah, M.J. &Wolpe, P.R. (2004). Monitoring and Manipulating Brain Function: New Neuroscience Technologies and Their Ethical Implications. Hastings Center Report, 34 (3), 35-45.

6. Flower, R. (2004). Lifestyle Drugs: Pharmacology and the Social Agenda. TRENDS in Pharmacological Sciences, 25 (4), 182185.

7. Hall, S.S. (2003). The Quest for a Smart Pill. Scientific American, 289, 54-65.

8. Rose, S.P.R. (2002). ‘Smart Drugs:’ Do They Work? Are They Ethical? Will They Be Legal? Nature Reviews Neuroscience, 3, 975-979.

9. Turner, D.C., et al. (2003). Cognitive Enhancing Effects of Modafinil in Healthy Volunteers. Psychopharmacology, 165, 260-269.

10. Wolpe, P.R. (2002). Treatment, Enhancement and the Ethics of Neurotherapeutics. Brain and Cognition, 50, 387-395.

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The Brain and Beyond...

Clinical Research on the Subject with Dementia: Ethical Concerns and Research Regulation Author: Nina M. Mirarchi, University of Pennsylvania Faculty Sponsor: Ellen Foley, Ph.D. Abstract While today’s prospective research subjects enjoy a greater measure of autonomy than those from the past, investigators must continually strive to protect vulnerable populations, especially cognitively impaired older adults with dementia.

Investigators should respect the person’s autonomy, while also considering the role of beneficence, nonmaleficence, and justice. The study’s risks must be weighed against the benefits, and researchers should obtain their subjects’ informed consent. Since competence and capacity tests do not always yield conclusive assessments of cognitive function, however, proxy decision-makers are sometimes appointed. Such a framework is problematic. Not only may proxy decision makers misinterpret the subjects’ wishes, but they may also ignore them altogether. In addition, some institutional review boards have recently been criticized for failing to protect research subjects. While various commissions have addressed some bioethical concerns, controversy remains over whether research on adults with dementia is ethical given the vulnerability of these subjects to exploitation.

Introduction Scientists have progressed considerably in the practice of research ethics since the mid-twentieth century. Not only has there been an increased focus on obtaining the participant’s voluntary, informed consent, there has also been a concerted effort to avoid unnecessary risks and obtain results offering benefit to the entire medical community. Furthermore, the autonomy of the subject has been consistently upheld, giving the subject the right to discontinue participation in a study if he or she wishes.

While today’s prospective research subjects undoubtedly enjoy more autonomy than those from the past, investigators should be especially careful to protect vulnerable and less autonomous populations like the cognitively impaired elderly, especially those with dementia.

Nina Maria Mirarchi is a Junior at the University of Pennsylvania. She is concentrating in Bioethics in the Health and Societies major, and she is minoring in French.

Ellen Foley, Ph.D. is the faculty sponsor for this submission. She is the Chair of the Health and Societies Department at the University of Pennsylvania.

Address: 249 South 36th St., Philadelphia, PA 19104 Email: efoley@sas.upenn.edu

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Anderson (2002) defines dementia as: “a progressive organic mental disorder caused by…confusion, disorientation, stupor, deterioration of intellectual capacity and function, and impairment of control of memory, judgment, and impulses” (p. 490). Alzheimer’s disease is the most common type of dementia, affecting 70% of dementia patients (Davis and Moreno, 2002).

Davis and Moreno (2002) note that: “most, if not all, older subjects who are cognitively impaired…are unable or unwilling to instigate a dialogue” (p. 24) if they are hesitant about participating in a study. Since it may not always be feasible to ascertain if a person with dementia is capable of adequately consenting, approaching this process ethically poses a challenge.

Ethical Concerns Whereas the principle of autonomy has traditionally been favored in the U.S. (Wolpe 1998), many forms of dementia have such devastating effects upon an individual’s intellectual capabilities that the autonomy model is inappropriate. Davis and Moreno (2002) observe: “the question becomes one of surrogacy for the consent to participate in research” (p. 28). Beneficence, justice, and nonmaleficence should therefore be applied in lieu of autonomy when considering whether to perform research on a subject with dementia. These principles can act as a “check” to ensure that the subject’s best interests are met.

The principles of beneficence and justice hinder the individual’s power to exercise his or her autonomy, as healthcare providers have the power to change a patient’s treatment if they feel such measures would benefit the patient (Wolpe 1998). Public policy professionals can influence the law and the development of clinical protocols in order to preserve universal fairness. The former typifies applied beneficence, whereas the latter illustrates applied justice.

If the subject with dementia has not clearly outlined his or her desires in the form of an advanced directive, the decision-making power is abdicated to a proxy decision maker. Proxies make decisions according to their beliefs about what would be most beneficial for the patient’s wellbeing. Sugarman, Cain, Wallace, and Welsh-Bohmer (2001), for example, found that some proxies chose to enroll the individuals for whom they were responsible in clinical research studies because they felt it gave the individual a greater measure of self-worth.

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The proxy could abuse his or her privilege of making decisions on behalf of a cognitively impaired adult. If abuse occurs, self-interested motives might be disguised as applied beneficence. Sugarman, Cain, Wallace, and Welsh-Bohmer (2001) conducted a study which interviewed 49 proxies of Alzheimer’s patients to ascertain their motives for enrolling the patients with Alzheimer’s disease as participants in research studies.

Sugarman et al. (2001) reported that some proxies stated that they had run out of treatment options, and were therefore willing to try nearly any experimental treatment. The proxies’ desperation to cure the disease may lead them to neglect the person’s best interests regarding treatment options. In such cases, it is crucial to apply the principle of justice, or universal fairness, to ensure that one does not exploit the participant in the name of purportedly beneficent practice.

Regulatory measures such as institutional review boards are designed to distinguish between self-interested motives and genuinely altruistic ones. IRB’s are comprised of professionals from various disciplines who meet once a month to review the protocols of all research studies.

The IRB monitors the recruitment of volunteers as well as the possible risks and benefits of the study for the participants (Curry 2002).

Lastly, the principle of nonmaleficence safeguards the volunteer from being exposed to research which could inflict harm. One of the most efficient methods for securing the non-maleficent clinical research on older adults with dementia is to evaluate the degree of risk involved in the proposed study.

Karlawish (2003) advocates for an increased level of scrutiny, particularly towards research procedures not designed directly to benefit the subject. In order to achieve the goal of minimal risk exposure, Karlawish proposes a risk assessment method which would allow proxy consent only if the risks posed by the research are no more than minimal and can be justified by the importance of the knowledge to be gained. Such a formula would provide a very concrete, objective standard for judging the degree of risk.

Informed consent is not only an ethical issue, but a legal one as well, since consent forms are considered legal documents which may either allow or prohibit research.

The three main pillars of informed consent include: voluntariness of the participant, full disclosure of information to the participants by the researchers, and degree of comprehension of the participants (Loue, 2002).

Federal guidelines mandate that the researchers inform the potential subject and his or her proxy of the research’s purpose, expected length, experimental procedures involved, potential risks and benefits, and if there are any alternative treatments available.

Furthermore, the researchers should explain to what degree Penn Bioethics Journal Vol. I, Issue 1 Spring 2005

confidentiality rights will be protected, as well as emphasizing that the subject is free to withdraw from the study at any time if he or she chooses (Loue, 2003). These measures are intended to remove any overtone of coercion.

Of the three facets of informed consent, perhaps the most difficult to evaluate in subjects with dementia is comprehension, which comprises competence and capacity. Loue (2003) defines competence as: “a legal judgment relating to an individual’s ability to perform specified functions, such as entering into a contract, executing a will, or making decisions related to personal care,” whereas capacity is defined as: “an individual’s decision-making ability” (p. 4).

Kim, Caine, Currier, Leibovici, and Ryan (2001) assessed the competence of individuals with Alzheimer’s disease in providing consent for participation in research.

The researchers compared the capacity of 37 subjects with mild-to-moderate Alzheimer’s disease with 15 elderly subjects without Alzheimer’s disease in giving consent to research in a hypothetical study. They found that 62% of the mildly to moderately impaired Alzheimer’s disease group were rated as incapacitated on at least one decisionmaking ability. By contrast, the control group of older adults performed the same task with ease. This illustrates that Alzheimer’s disease does indeed pose an obstacle to full comprehension.

Research Regulation The foundation of research ethics can be traced to the drafting of the Nuremberg Code in the 1940s, followed

by Declaration of Helsinki in 1964. Together, these codes sought to prevent future abuses of research participants’ rights, especially given the atrocities that occurred under the Nazi regime during World War II. Many research regulations were revised ten years after the Declaration of Helsinki. According to Kapp (2002), the following 1974 milestones advanced the field of research ethics: 1.Department of Health, Education, and Welfare (DHEW) policy making institutional review boards (IRBs) official and 2. The passage of the congressional National Research Act. The latter milestone established the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, also known as the Belmont Commission. Issued in March of 1978, The Belmont Report addressed some ethical issues surrounding research on patients with cognitive impairments. Namely, it dealt with issues surrounding autonomy and informed consent.

One of the most significant accomplishments was the Commission’s establishment of four distinct categories of research subjects: “those able to give informed consent, those unable to give informed consent but nonetheless

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able to “assent” (capable of understanding the procedure, the right to withdraw, and the choice to participate), those unable to consent or assent but who do not object to participation, and, finally, those who object to participation” (Bonnie, 1997). This development eliminated the previous dichotomy of labeling subjects as either fully competent or fully incompetent.

In 1997, Bonnie concluded that protection of cognitively impaired adults in research studies was fundamentally flawed, claiming that regulatory practice relied too deeply on the consciences of the principal investigators and the whims of a study’s IRB rather than national standards. Some other criticisms include: the belief that some IRBs spend more time on writing informed consent forms than supervising the consent process, the inadequacy of resources and training for IRB members, and the presence of conflicts of interest between IRB members and affiliate organizations (Kapp, 2002).

The possibility of conflicts of interest is an especially troubling concern, for it diminishes the objectivity of research regulation.

However, protection of subjects with dementia has improved significantly since 1997. In his review of research regulation, Kapp (2002) noted that many groups have developed and implemented revised research guidelines for the protection of research participants with diminished capacity. These include the American College of Physicians, the Council of Europe, the British Medical Research Council, the American Psychiatric Association, and the National Institutes of Health.

The Alzheimer’s Association has also issued a statement on subject protection. While they believe Alzheimer’s patients should not be excluded from research studies, they stress the importance of minimal risk, proxy consent when necessary, and only enrolling subjects in studies with greater than minimal risk if the subject is capable of giving his own consent or if he has previously consented in a research-specific advanced directive (Loue, 2002).

Bernstein and Weiner (1996, p. 268-269) admit that sometimes some studies seeking to explore the pathogenesis and clinical outcomes of a disease offer no therapeutic benefit to the research subject. In phase 1 studies, investigators administer medication to the subject in small doses, gradually increasing the dosage to test for the drug’s toxicity.

In such cases, there is a potential for a tremendous amount of benefit on many levels. If a new drug is developed as a result of research, the researchers and institution gain recognition, while the drug companies amass profit. The research subject, however, gains no direct benefit from his or her participation save the fulfillment of altruistic motives.

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Such a phenomenon whereby the benefit of research unduly favors the interests of the researchers rather than the subjects may be considered a “conspiracy of silence.”

If the proxy decision makers or the subjects themselves were consistently informed that phase 1 studies offer no therapeutic benefits, one would presume that enrollment in such studies would sharply decline.

Ostensibly, the issue of clinical research on cognitively impaired older adults is controversial. The main conflicts hinge on whether or not cognitively impaired adults are capable of adequately consenting, and, if not, whether proxy decision makers are capable of offering substituted judgment for the prospective subjects. In addition, there is a dearth of regulatory oversight in the form of educating proxy decision-makers about the informed consent process.

Kapp (2002) concludes that excluding older adults with mental impairments from the participant pool would unfairly limit research, a process that is necessary for clinical medicine to advance. However, Kapp also acknowledges the value of protecting the rights of those who are unable to protect themselves. Indeed, the interaction among ethical principles is complex in the case of research on those with dementia, especially since a cure for Alzheimer’s can only materialize after scientists perform extensive clinical research.

I therefore conclude that research on cognitively impaired adults will continue, perhaps even increase, in the coming decades. While some level of corruption in the form of conflicts of interest may be inevitable under the bureaucratic framework of an institutional review board, I propose that it is not altogether impossible to reduce. Furthermore, proxy decision makers should receive more guidance from the medical and legal professions as to how to weigh a subject’s interest, as the crux of the debate over research on participants with dementia centers around the judgments of these individuals.

References 1. Anderson, K. (Ed.). (2002). Mosby’s Medical, Nursing, and Allied Health Dictionary (6th ed.). St. Louis: Mosby.

2. Bernstein, B.E., & Weiner, M.F. (1996). Legal and ethical aspects of dementia. In Weiner, M.F. (Ed.), The Dementias: Diagnosis, management, and research (2nd ed., pp.251-271). Washington, D.C.: American Psychiatric Press.

3. Bonnie, R.J. (1997). Research with cognitively impaired subjects: Unfinished business in the regulation of human research. Archives of General Psychiatry, 54(2), 105-111.

4. Curry, L. (2002). Ethics and legal considerations in health services research. In M.B. Kapp (Ed.), Ethics, aging, and law review: Vol. 8. Isssues in conducting research with and about older persons (pp. 57-75). New York: Springer Publishing Company.

5. Davis, W.S. & Moreno, J.D. (2002). Decisional capacity and consent for research in older adults who are cognitively impaired. In M.B. Kapp (Ed.), Ethics, aging, and law review: Vol. 8. Isssues in conducting research with and about older persons (pp. 19-38). New York: Springer Publishing Company.

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Clinical Research on the Subject with Dementia 6. Kapp, M.B. (2002). Regulating research for those with decisional impairment: implications for mental health professionals. In M.B. Kapp (Ed.), Ethics, aging, and law review: Vol. 8. Isssues in conducting research with and about older persons (pp. 7799). New York: Springer Publishing Company.

7. Karlawish, J.H.T. (2003). Research involving cognitively impaired adults. The New England Journal of Medicine, 348(14), 1389-1392.

8. Kim, S.Y., Caine, E.D., Currier, G.W., Leibovici, A., & Ryan, J.M. (2001). Assessing the competence of persons with Alzheimer’s Disease in providing consent for participation in research.

American Journal of Psychology, 155(5), 712-717.

9. Loue, S. (2002). Ethical issues in informed consent in the conduct of research with aging persons. In M.B. Kapp (Ed.), Ethics, aging, and law review: Vol. 8. Isssues in conducting research with and about older persons (pp. 3-17). New York: Springer Publishing Company.

10. Sugarman, J., Cain, C., Wallace, R., & Welsh-Bohmer, K.A. (2001). How proxies make decisions about research for patients with Alzheimer’s Disease. Journal of the American Geriatrics Society, 49(8), 1110-1118.

11. Wolpe, P.R. (1998). The Triumph of Autonomy in American Medical Ethics. In R. DeVries & H. Subedi (Eds.), Bioethics and Society: Sociological Investigations of the Enterprise of Bioethics (pp. 38-59). New York: Prentice Hall.

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The Brain and Beyond...

“Soft” Science in the Courtroom?: The Effects of Admitting Neuroimaging Evidence into Legal Proceedings Author: Bridget Pratt, Haverford College Faculty Sponsor: Karl Johnson, Ph.D. Abstract There is an ongoing debate regarding the proper standards for admitting neuroimaging evidence into legal proceedings. At present, neuroimages are increasingly being introduced as part of psychiatric testimony. In courtrooms, however, the idea that two visibly different brain scans offer proof of insanity has become increasingly conventional. This becomes a problem for the criminal justice system because by understanding neuroimaging evidence in such a manner, jurors fundamentally misinterpret it.

Furthermore, given the mechanical objectivity associated with neuroimages, jurors' erroneous inferences are then afforded undue weight in their assessments of defendants' mental states. Lawyers are now able to convey that their clients weren't rational when they committed their crimes simply by showing jurors two dissimilar neuroimages. In order to mitigate the prejudicial effects of such evidence, it is, therefore, imperative that a new neuroimaging evidence admissibility standard be adopted by the American legal system.

In 1981, John Hinckley Jr. shot President Reagan and five other people in what was apparently an attempt to impress actress Jodie Foster. One year later, he was brought to trial and pleaded not guilty by reason of insanity (NGRI). As part of his insanity defense, Hinckley’s lawyers petitioned the judge to introduce a computed tomography (CT) scan that showed a “widening” of sulci in Hinckley’s brain in support of a diagnosis of schizophrenia (Kulynych, 1997, p. 1252). In doing so, they aimed to prove that Hinckley had a mental illness that impaired his ability to distinguish right from wrong and, in effect, absolved him of criminal responsibility for his violent actions (Dumit, 1999, p. 174).

U.S. v. Hinckley represents the first high-profile case involving neuroimaging evidence. Over the last twentyfive years, neuroimages have increasingly been used in

Bridget Pratt is a Senior at Haverford College and is majoring in Biology.

Email: bpratt@haverford.edu Karl Johnson, Ph.D. is the faculty sponsor for this submission. He is an Associate Professor of Biology at Haverford College.

Address: 370 Lancaster Ave. Haverford, PA 19041 Email: kjohnson@haverford.edu Penn Bioethics Journal Vol. I, Issue 1 Spring 2005

expert testimony to support psychiatric diagnoses. Neither the legal system nor the scientific community recognizes an association between insanity and abnormal brain activity. Even so, as asserted by Beaulieu, “the argument that ‘it’s all in the brain’ hardly raises an eyebrow anymore” (2003, p. 516). Furthermore, employing neuroimages as “evidence” of defendants’ insanity is typically found to be “very persuasive” by jurors (Kulynych 1997, p. 1253).

Consequently, there is an ongoing legal controversy as to the proper standards for admitting neuroimaging evidence into court proceedings. Do the prejudicial effects associated with neuroimaging evidence outweigh its probative value such that it is ethically acceptable to withhold it from jurors? With respect to the continuing debate, this essay aims to describe how jurors interpret neuroimaging evidence and why this presents the American criminal justice system with a major problem. It advances the argument that, given the high potential for misuse of this type of evidence, the visual aspects of brain images should be banned from courtrooms.

In recent years, neuroimaging evidence has become a tool of defense attorneys in death penalty cases.

Neuroimages are often used in trials in which lawyers are arguing that their clients are not guilty of capital offenses by reason of insanity (PCB Staff, 2004). While it is true that defendants do not frequently enter NGRI pleas, when the insanity defense has been raised, neuroimages have increasingly been introduced during psychiatric testimony as evidence of mental disorder (see People v. Weinstein, McNamara v. Borg , U.S. v. Hinckley). This raises the fundamental question: Why would defense lawyers assume that jurors will believe that brain images can show them something about diseases of the mind?

In large part, Americans’ acceptance of the use of neuroimaging evidence in psychiatric testimony stems from the recent popularization of the biological model of the mind. Over the past decade, the press’s coverage of advances in brain imaging has served to create the impression that technology is now capable of mapping aspects of the mind to the functioning of specific structures/networks in the brain. Given that articles in major publications such as the New York Times, Newsweek, and Time have been steeped with statements that equate brain activity and mental processes (see Jensen, 1999; Lemonick, 1995; Begley, 1992), it is not surprising that

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“Soft” Science in the Courtroom?

the idea that the mind has a biological basis has become deeply rooted in American culture.

The popular conception that the mind = the brain has, in turn, affected society’s understanding of mental disorder. With the help of the media, the idea that the mind has a biological basis has effectively given rise to the prevailing paradigm of mental disorder, which defines mental illness as a dysfunction of brain physiology (Olsen, 2000, p. 413). Inherent in the biological model of mental disorder is the notion that if a person truly has a diseased mind, s/he will also have some sort of visible aberration(s) in brain structure and/or functioning. Since the news media has painted neuroimaging as the key to “brain mapping,” it has presented new imaging technologies to the public as the main tools for identifying the presence of these brain abnormalities (Begley, 1992). In addition, the press has created the impression that diagnoses of mental illness can be made by comparing an individual’s brain scan to a “normal” brain scan. The brain images in magazines and scientific articles are typically presented with simple captions and selected because they represent extreme examples (i.e., images that look the most different from each other) (Dumit, 2004, p. 96). Thus, the neuroimages that people usually encounter are those found in illustrations consisting of a pair of extreme images labeled with captions that describe the brains as “normal” and, for example, “schizophrenic” (Dumit, 2004, p. 97).

Such publication practices invite readers to conclude that the comparison of two neuroimages can be used to diagnose specific kinds of mental disorders. In this way, consistent exposure to such pictures in the news media has led people to believe that if an individual’s brain image is visibly different from a “normal” individual’s brain image, s/he does not have a normal brain-type and, therefore, has a mental disorder.

Given that popular portrayals and everyday speech consistently reiterate that mental illness implies insanity, people have come to view mental disorder and insanity as analogous labels (Wahl 1995, p. 21). As a result, the public often makes the mistaken leap in logic that evidence of mental illness is evidence of insanity (Dumit 1999, p. 183).

In light of this assumption, the notion that two visibly different neuroimages offer proof of insanity has become increasingly popular. Americans have developed a cultural conception of what mental disease looks like and, in effect, the instance of two dissimilar neuroimages has become an iconic image from which the implication of insanity is immediately understood. As a result, lawyers are now able to convey that their client wasn’t rational when s/he committed his/her crime simply by showing the jury two images—a defendant’s ‘abnormal’ brain scan and a “normal” brain scan. Based on this “evidence,” jurors easily infer that the defendant’s brain functions differently than a ‘normal’ person’s brain. There is no longer any Penn Bioethics Journal Vol. I, Issue 1 Spring 2005

need for an expert witness to say that the images offer proof of mental illness or insanity. Jurors know what the presentation of such images means, as the message that an abnormal brain = insanity is implicit in the images themselves.

In light of what the public believes, the more important question then becomes: Can neuroimages actually prove that defendants are insane? At present, the resounding answer from the scientific community is NO! By interpreting neuroimaging evidence as objective proof of defendants’ insanity, jurors make two key errors: 1) assuming that diagnoses of mental illness can be made on the basis of brain images alone and 2) assuming that all people with mental disorders are insane. While neuroimages do, in fact, aid in the diagnostic process, to date, no studies have established a causative relationship between specific abnormalities in brain structure/ functioning and particular mental illnesses (Dumit 2004, p. 111). As a result, the diagnosis of mental disorder cannot be made solely on the basis of neuroimages. In addition, whether or not defendants have a mental illness is often irrelevant to their capacity to distinguish right from wrong. Everyone with a mental disorder is not, by definition, legally insane (Reeves et al. 2003, p. 94). Thus, despite what the public has come to believe, neuroimages cannot offer proof of either a defendant’s mental illness or his/her insanity.† Even so, this does not necessarily constitute an ethical dilemma for the criminal justice system. So jurors misinterpret some evidence. So what? They hear a lot of testimony from both sides during trials. Why does it matter that they misunderstand one specific piece of evidence? In short, what turns jurors’ erroneous interpretation of neuroimaging evidence into a problem is their tendency to give it undue weight in their assessments of defendants’ mental states. In allowing neuroimaging evidence to be shown to juries, the legal system runs the risk of biasing jurors towards finding defendants not guilty by reason of insanity (NGRI).

In court, imaging evidence is given undue importance and credibility because it is a form of scientific evidence.

As with most forms of scientific evidence, neuroimages derive significant power from the mechanical objectivity that the public associates with the technologies that generate them. With respect to brain imaging, mechanical objectivity refers to the idea that neuroimaging technologies can

†

Under the M’Naughten Rule, legal insanity is defined as the inability to distinguish right from wrong. As noted by Kulynych (1997), current neuroimaging techniques aren’t sophisticated enough to demonstrate the existence of such cognitive impairments. No neuroimaging research to date has shown that specific brain abnormalities can cause this type of impairment and, thus, brain scans cannot be used to diagnose insanity under current legal tests.

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“Soft” Science in the Courtroom?

generate images that automatically represent the brain in a way that bypasses the unreliability of human intervention (Beaulieu 2000, p. 45). Since neuroimages are generated by “reliable” methods, jury members presume that they directly and impartially represent brain structure or activity.

This becomes a problem because jurors often fail to distinguish between the data produced by imaging technologies and their “soft” science interpretation (i.e., what the images suggest about defendants’ mental states) (Kulynych 1997, p. 1259). Accordingly, given that jurors view neuroimages as snapshots of the brain in action, they also consider their erroneous evaluation of what two pieces of neuroimaging evidence show (i.e., proof of insanity) to be hard, scientific fact. Consequently, they tend to place a high degree of certainty on these conclusions, which biases them towards finding defendants NGRI. Nevertheless, jurors’ tendency to attach undue credibility to their interpretation of neuroimaging evidence doesn’t represent the only way that neuroimages’ prejudicial effects present a danger to the legal system.

In buying into the popular conception that an abnormal brain scan implies insanity, jurors also open themselves up to being exploited by lawyers. Although proof derived from scientific methods is often viewed as being objective, neuroimaging technologies do not necessarily bypass the unreliability of human intervention. Due to the lack of standardization amongst imaging protocols, steps in the data analysis process can easily be manipulated to generate a neuroimage that gives the illusion of striking differences (relative to a “normal” brain scan) to a jury (Reeves et al.

2003, p. 90). By applying certain coloring schemes, for example, technicians can make even closely similar brainsets appear dissimilar and, thereby carry out data set processing such that the resultant neuroimages look visibly different (Dumit 2004, p. 91).

With neuroimaging technologies, there comes the potential to manipulate the analysis of data in order to generate brain images that resemble cultural stereotypes of what insanity looks like. Despite appearing to be objective photographs of the ‘truth,’ neuroimages can, in reality, be purposefully made to appear visibly different so that lawyers can use them to substantiate their subjective arguments about their clients’ mental states. Neuroimaging evidence can, therefore, be intentionally employed by lawyers to get defendants admitted to mental hospitals rather than to death row. In this way, allowing such evidence to be introduced into legal proceedings creates the risk that jurors will be misled in ways that subvert the evidentiary process. Furthermore, these prejudicial effects invite individuals to enter NGRI pleas. Although the insanity defense is not raised very frequently at present, given the capacity for neuroimaging evidence to bias jurors’ assessments of defendants’ mental states, it is likely Penn Bioethics Journal Vol. I, Issue 1 Spring 2005

that we will see a increasing number of NGRI pleas entered in future court cases unless the visual aspects of this type of evidence are deemed inadmissible.

In order to minimize the likelihood of undue prejudice affecting jurors’ evaluations of defendants’ mental states, the American legal system must adopt a new admissibility standard for neuroimaging evidence. The new admissibility test should disallow the presentation of neuroimages to juries during psychiatric testimony and, instead, only permit expert witnesses to give verbal descriptions of what the images show. As part of this test, such verbal descriptions should be subject to a “social framework” form of evidence management. According to Kulynych, this would require that judges inform juries what inferences drawn from neuroimages can be supported by current research so that jurors will have an empirical “framework” with which to evaluate the validity of subsequent psychiatric testimony (1997, p. 1269). Judges would, therefore, likely instruct juries that research findings do not support extrapolating diagnoses of mental illnesses let alone insanity from PET or fMRI scans. In doing so, the weight that jurors place on experts’ subsequent claims that neuroimages offer proof of insanity will be reduced. Thus, by banning lawyers from showing juries neuroimages and having judges provide jurors with an empirical “framework,” this new admissibility standard will make neuroimaging evidence appear less like objective snapshots of insanity. In effect, the criminal justice system will increase the chance that the jurors’ assessments of defendants’ mental states will be more accurate.

References 1. Beaulieu, A. (2003). Brains, maps and the new territory of psychology. Theory & Psychology, 13, 561-568.

2. Beaulieu, A. (2000). The brain at the end of the rainbow: The promises of brain scans in the research field and in the media.

In J. Marchessault & K. Sawchuk (Eds.), Wild science: Reading feminism, medicine, and the media (pp. 39-52). New York: Rutledge.

3. Begley, S. (1992, April 20). Mapping the brain. Newsweek.

4. Dumit, J. (2004). Picturing personhood: Brain scans and biomedical identity. Princeton: Princeton University Press.

5. Dumit, J. (1999). Objective brains, prejudicial images. Science in Context, 12, 173-201.

6. Jensen, J. (1999, May 22). Mapping thoughts and even feelings.

New York Times, p. B9.

7. Kulynych, J. (1997). Psychiatric neuroimaging research: A hightech crystal ball? Stanford Law Review, 49, 1249-1270.

8. Lemonick, M.D. (1995, July 17). Glimpses of the mind. Time.

Retrieved October 12 th, 2004, from http://www.time.com/time/ classroom/psych/unit3_article1.html 9. Olsen, D.P. (2000). Policy implications of the biological model of mental disorder. Nursing Ethics, 7, 212-224.

10. President’s Council on Bioethics Staff. (2004, September). An overview of the impact of neuroscience evidence in criminal law. Retrieved November 4th, 2004, from The President’s Council on Bioethics Online: http://www.bioethics.gov/background/ neuroscience_evidence.html 11. Reeves, D., Mills, M.J., Billick, S.B., & Brodie, J.D. (2003).

Limitations of brain imaging in forensic psychiatry. Journal of the American Academy of Psychiatry and the Law, 31, 89-96.

12. Wahl, O.F. (1995). Media madness: Public images of mental illness. New Brunswick, NJ: Rutgers University Press.

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The Brain and Beyond...

Euthanasia and Physician Assisted Suicide: Effect on the Doctor-Patient Relationship Author: Nadine Spigel, University of Pennsylvania Faculty Sponsor: Paul R. Wolpe, Ph.D. Abstract The subjects of euthanasia and physician-assisted suicide (PAS) serve as controversial topics, not only in the United States, but all around the world.

Euthanasia, defined as “the hastening of death of a patient to prevent further sufferings,” has different forms. These include: voluntary euthanasia, involuntary euthanasia, and non-voluntary euthanasia, as well as active and passive euthanasia.

Physician-assisted suicide involves the physician providing a means in which a patient can end his life. Many arguments, both positive and negative, have surfaced concerning how the discussion of euthanasia and physician-assisted suicide effect the doctor-patient relationship. Upon examining both sides closely, the open discussion of euthanasia and patient-assisted suicide between the doctor and patient is beneficial, as it will improve both the doctorpatient relationship, as well as the quality of care the doctor is able to provide for the patient.

The subjects of euthanasia and physician-assisted suicide (PAS) serve as controversial topics, not only in the United States, but all around the world. Euthanasia, defined as “the hastening of death of a patient to prevent further sufferings”, has different forms. These include: voluntary euthanasia, which implies the patient has given consent; involuntary euthanasia, where at the time of euthanasia, the patient, though competent and able to make decisions, is not consulted; and non-voluntary euthanasia, in which the patient is not able to make decisions at the time of euthanasia (Chao, Chan & Chan, 129). In addition, active euthanasia involves an actual act towards death, such as the injection of a lethal drug, whereas passive euthanasia entails the omission of an act, for example, withdrawing from treatment (Chao, Chan & Chan, 130).

Physician-assisted suicide involves the physician providing a means in which a patient can end his life, usually via a

Nadine Spigel is a freshman at the University of Pennsylvania and is a Nursing major.

Email: nadines@nursing.upenn.edu Paul Root Wolpe, Ph.D. is the faculty sponsor for this submission. He is the Senior Fellow at the Center of Bioethics and an Assistant Professor of Psychology at the University of Pennsylvania.

Address: 3401 Market St, Suite 320; Philadelphia, PA 19104 Email: wolpep@mail.med.upenn.edu Penn Bioethics Journal Vol. I, Issue 1 Spring 2005

prescription of a lethal drug that the patient can administer himself (Chao, Chan & Chan, 130). “Patients are experts about their own lives and their psychosocial-spiritual circumstances, and so contribute to collaborative decision making by expressing personal preferences, beliefs and values. In the context of a physician-patient partnership, patients may veto recommended but unwanted treatment, and physicians may veto (and not even disclose or discuss) overly har mful, futile, or useless treatments and procedures” (Davis, Davis, Smith & Cooper, 3787). Many arguments, both positive and negative, have surfaced concerning how the discussion of euthanasia and physicianassisted suicide affect the doctor-patient relationship.

Quality of Doctor-Patient Relationship Increased with Open Discussion of Euthanasia and PAS The quality of the doctor-patient relationship does not rest on a doctor’s willingness to provide a lethal prescription, but rather on his willingness to discuss the matter openly, and develop a trustworthy, comforting relationship. According to Ganzini et al. (2001), as a result of Oregon’s 1997 enacting of the Death with Dignity Act, “a much larger proportion of physicians discussed assisted suicide or the Death with Dignity Act with patients.

Physicians perceived that more patients found these conversations helpful than upsetting.” In general, doctors feel that as a corollary of this act and its resulting conversations, they have “made efforts to improve their ability to care for these patients” (2368). However, whether or not euthanasia and PAS are legalized, studies have shown that many dying patients found comfort in discussing these options with physicians. Many patients surveyed concluded that when he or she “encountered a clinician who was willing to discuss PAS, they felt able to disclose many concerns about dying” (Back et al., 1259).

One family member of a patient stated that all she wanted was “‘another sane adult’ who could ‘talk in terms…that removed the taboo from the process’ by giving ‘a real, clear picture of possible approaches without advocating [PAS]’” (Back et al., 1260). In addition, once patients found they were able to discuss this topic with the physician, the value of clinician openness evolved. The patient then felt comfortable inquiring about other worries, fears and vulnerabilities concerning his or her illness and imminent death (Back et al., 1260). This is often more important to the patient than actually receiving a prescription. In matters of mortality, doctors are often

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the people to whom patients want to turn to for comfort when worrying about medical conditions and their death (Van Leeuwen & Kimsma, 159). By ensuring confidential and non-restrained communication, trust is built, and the patient becomes more willing to discuss all alternatives with the doctor, as well as inquire about any concerns or fears about the dying process, which would have been uncomfortable to discuss previously. Many times, when the pain is adequately treated, “both depression and suicidal ideation diminish, as well as interest in a hastened death” (Jamison, 422). The open discussion of euthanasia and PAS has a significantly positive impact on the physicianpatient relationship, and with the increased trust, the doctor is more able to serve as a means of support for both the patient and family.

Negative Effects Occur When Doctors Refuse to Discuss Euthanasia and PAS Conversely, others stated that when a physician seemed unwilling to discuss the subject of euthanasia and PAS, they felt limited in the questions they could ask, thus hindering the doctor-patient relationship. One patient wept during her interview as she recalled frustrations with her physician: “You’re trying to get a doctor to sit down and listen to you…but they never, ever get the overall picture.”

Because of her doctor’s unwillingness to discuss PAS, he also “missed opportunities to connect with this patient’s deepest concerns, which included her quality of life, her prognosis, and her suffering” (Back et al., 1262). By refusing to discuss euthanasia and PAS with patients, doctors put themselves at a disadvantage in that the patient no longer trusts the doctor and a communication barrier is implemented. “Persistent thoughts of death are often correlated with unresolved clinical depression or pain or both, as well as lack of family or social support” (Jamison, 425). The doctor, unable to realize the underlying reasons for inquiry of euthanasia, cannot help or support the patient in his or her time of need, and may inadvertently increase the overall suffering of the patient. This, in turn, further weakens the doctor-patient relationship.

Quality of Doctor-Patient Relationship Decreased with Open Discussion of Euthanasia and PAS Another side to this argument states that by openly discussing the practice of euthanasia and PAS, the doctorpatient relationship deteriorates. By allowing the discussion to take place, the patient is allotted too much autonomic power. Davis et al. asserts that “physician judgment based on knowledge, expertise, skill, and practical wisdom will be subservient to patient desires and demands. The physician-patient relationship, built on mutuality, reciprocity, and respect, will falter” (Davis, Davis, Smith & Cooper, 3787). It is known that some physicians already secretly participate in euthanasia or PAS, and as a result Penn Bioethics Journal Vol. I, Issue 1 Spring 2005

many fear that having the topic open for discussion will induce the idea of a ‘slippery slope’, leading to more frequent occurrences. This can put the doctor in an uncomfortable situation, as patients may be more apt to challenge his authority and demand a prescription, overstepping the boundaries set forth by the principle of autonomy.

This slippery slope, aside from undermining the physician’s authority, would ultimately lead to less trusting relationships between the patient and the doctor: “If a physician could save a life and, on the other hand, could end a life, it would create ambiguity in the duty of the physician” (Chao, Chan & Chan, 132). In a study conducted by Ezekiel J. Emanuel, almost half the patients surveyed felt that euthanasia and PAS would “disrupt the trust necessary for the physician-patient relationship and generate psychological distress, not reassurance” (Emanuel, 330). Because physicians play such an active role in introducing and influencing health care decisions, patients rely on physicians when “fear, lack of information, unfamiliarity and other factors limit their independence and authority”(Lorenz & Lynn, 2282). Doctors’ personal views of euthanasia could interfere with the doctor-patient relationship. Patients often reported that the topic of PAS “provoked a strong emotional response from the clinicians that made further conversation awkward” (Back et al, 1258). As discussed earlier, this situation puts both the doctor and patient at a disadvantage, as the relationship is strained. Should the doctor advocate its use too strongly, the patient will doubt the physician’s intentions for treatment, and fear involuntary euthanasia. Patients’ fears concerning the discussion of euthanasia and PAS, stemming from the potentials of the ‘slippery slope’, prove to be legitimate, as these problems have arisen in the past. The most recent case of doctors’ abuse of power occurred in the 1990s, when Dr. Kevorkian “escalated his practice from assisted suicide to direct killing” and even went so far as to film the procedure, later allowing the video to be shown on national television (Chao, Chan & Chan, 129).

Upon hearing a physician advocate euthanasia, one cannot help but let his or her mind wander to this horrifying incident, and wonder if his or her doctor secretly shares his same views. Discussion of euthanasia elicits fear in patients, especially during a time of such vulnerability, ultimately resulting in a less trusting and weaker relationship with the physician.

How to Counter Some Concerns of the Negative Effect of Discussion Some of the concerns described by patients can be regulated by implementing recommended guidelines for the physician to follow when engaging in such conversations.

The physician must be able to effectively evaluate the conversation, as well as direct it appropriately. He can do

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so by asking both himself and the patient specific questions upon the patient’s mention of a hastened death. Some of these helpful questions should include: Why is this patient asking for help? Why is the patient expressing this desire at the present time? Is the request understandable given the patients’ physical condition and quality of life? Do the patient’s expressed motives provide for treatment responses that better serve his or her needs? Does the patient actually want to die, or is he or she using the request for some other purpose? (Jamison, 419).

By having a set list of questions and issues to be aware of, the prepared clinician can react to the patient in the most appropriate manor. At the same time the doctor must put personal feelings aside and remember to express a non-biased perspective, so that the patient does not feel excess anxiety upon participating in the discussion, thus weakening the physician-patient relationship. In order to ease patients’ fears of the doctor and establish the best physician-patient relationship possible, clinicians must be: willing to understand a patient on his or her own ground—as a person who is facing the reality of death. It includes the tasks of listening deeply, showing genuine concern, and respecting the patient’s journey, whatever his or her ultimate decision. Only then can a clinician truly work with such a patient in an attempt to alleviate or mitigate possible physiological and psychological suffering that may underpin the patient’s decision. It is by facing these life and death issues from within the physician-patient relationship that the true skills and ethical values of clinicians are put to the test and proven. (Jamison, 426) The doctor must be confident in discussing such issues with patients, as a direct relationship exists between the comfort of a doctor to the comfort of the patient. In addition, the doctor should be prepared, upon sensing an uncomfortable patient, to move the conversation in a different direction, discussing alternatives and evaluation of the patient’s individual situation. By having these, or similar policies established, the clinician is more adamantly equipped to address such a delicate issue, and use communication as a tool to focus on the underlying issues, while at the same time putting the patient at ease.

Conclusion When dealing with the discussions of either euthanasia or physician-assisted suicide, the following conclusions come to mind: the physician-doctor relationship strengthens when the patient brings up the subject on his or her own, and the doctor is willing to discuss the option in a non-biased manner. By making the discussion a comfortable topic, the doctor will then be able to understand the roots of the patient’s concerns. A higher

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level of trust is established, the patient feels more confident in the doctor and gains more support, while the doctor is able to better understand the patient and treat him more adequately. Often times, patients discuss hastening his or her death because of clinical depression, fear of intolerable pain and suffering, or fear of being a financial burden on the surviving family. If the doctor takes the time to talk with the patient, establishing an environment conducive to open discussion, these issues have the opportunity to surface, and options to alleviate concerns may be addressed.

The relationship, however, is weakened when the doctor refuses to discuss the matter altogether, or strongly advocates for one side. As mentioned above, a physician exhibiting a strong bias weakens the relationship by either putting the patient in an uncomfortable situation in which he or she feels unable to reveal all concerns regarding his or her illness and impending death, or by causing fear in the patient, who may then question the physician’s intent when advocating certain treatment options. Ultimately, as long as conversed in a professional, non-biased manner, the open discussion of euthanasia and physician-assisted suicide benefits the doctor-patient relationship, as the patient gains trust, and the doctor gains a higher level of understanding.

References 1. Back, Anthony L., MD; Starks, Helene, MPH; Hsu, Clarissa, PhD; Gordon, Judith R., PhD; Bharucha, Ashok, MD; and Pearlman, Robert A., MD, MPH (2002). “Clinician-Patient Interactions About Requests for Physician-Assisted Suicide: A Patient and Family View”. The Journal of the American Medical Association.

Vol. 162, p. 1257-64. Retrieved October 23, 2004, from <www.archinternmed.com> 2. Chao, DVK; Chan, NY; and Chan WY (2002). “Euthanasia revisited”. Family Practice. Great Britian: Oxford University Press.

19(2) p. 128-34.

3. Davis, Mellar P.; Davis, Deborah Doan; Smith, Martin L.; and Cooper, Kathleen (2001). “Just Whose Autonomy Is It?” Journal of Clinical Oncology. 19(17) p. 3787-89. Retrieved October 23, 2004, from <http://www.jco.org> 4. Emanuel, Ezekiel J (1999). “What is the Great Benefit of Legalizing Euthanasia or Physician-Assisted Suicide?” Ethics.

Chicago: University of Chicago Press. 109(3) p. 629-35.

5. Ganzini, Linda, MD; Nelson, Heidi D., MD, MPH; Lee, Melinda A., MD; Kraemer, Dale F., PhD; Schmidt, Terri A., MD; and Delourit, Molly A., BA (2001). “Oregon Physicians’ Attitudes About and Experiences With End-of-Life Care Since Passage of the Oregon Death with Dignity Act”. The Journal of the American Medical Association. Vol. 285, p. 2363-69 6. Jamison, Stephan (2000). “Factors to Consider Before Participating in a Hastened Death: Issues for Medical Professionals”. Psychology, Public Policy, and Law. Washington, DC: American Psychological Association, Inc. 6(2) p. 416-33.

7. Lorenz, Karl, MD, MSHS; Lynn, Joanne, MD, MA, MS (2003).

“Moral and Practical Challenges of Physician-Assisted Suicide”.

The Journal of the American Medical Association. 289(17) p.

2282. Retrieved October 23, 2004, from <www.archinternmed.com> 8. Van Leeuwen, Everet; and Kimsma, Gerrit (2000). “Problems Involved in the Moral Justification of Medical Assistance in Dying: Coming to Terms with Euthanasia and Physician-Assisted Suicide”. Annals New York Academy of Sciences. New York City: New York Academy of Sciences Press. p. 157-72.

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The Brain and Beyond...

Pediatric Cochlear Implants: The Great Debate Author: Aviva Weinberg, University Of Pennsylvania Faculty Sponsor: Paulr R. Wolpe, Ph.D. Abstract: The rise and refinement of the cochlear implant, a device meant to correct for sensorineural hearing loss in prelingually deaf children, has faced much debate and criticism. The controversy over this corrective technology has revealed a significant social divide between the hearing and the non-hearing parents of these deaf children. While the hearing parents welcome the implant as an exciting new medical remedy for their children’s deafness, the nonhearing parents reject the implant as a tool of discrimination. The source of this divide seems to lie in two very different operative paradigms for deafness: the pathological and the sociocultural. The hearing parents’ pathological view places deafness as an auditory deficit meant to be repaired, while the non-hearing parents view deafness as a sociocultural identity. Understanding these divergent social perspectives sheds light on the heavy controversy surrounding the cochlear implant and its hopes for future use.

Over the past several years, cochlear implant technology and its attendant train of ethical quandaries have made headline news. The debate over the determination to use cochlear implants in prelingually deaf children brings to light a host of legal and ethical issues, including informed consent and parental decision making, questions of the cost-effectiveness of surgery and therapy, risk assessment, and the ethical dilemma of refusal of treatment. The sociological dimension of this bioethical debate highlights two per vasive trends: a distinct misunderstanding of Deaf Culture, and a more general socio-cultural blindness to those who are “different.”

This socio-cultural blindness is not unique to the issue of cochlear implants. In the case of physician-assisted suicide and the disability community’s protests, it was the existence of a cultural ignorance on the part of the socalled “normal” community which made it nearly impossible for the disability community’s wishes to be understood and respected. American society tends to operate on these cultural assumptions and social biases, Aviva Weinberg is a Senior at the University of Pennsylvania and is a Fine Arts major.

Email: avivaw@sas.upenn.edu Paul Root Wolpe, Ph.D. is the faculty sponsor for this submission. He is the Senior Fellow at the Center of Bioethics and an Assistant Professor of Psychology at the University of Pennsylvania.

Address: 3401 Market St, Suite 320; Philadelphia, PA 19104 Email: wolpep@mail.med.upenn.edu Penn Bioethics Journal Vol. I, Issue 1 Spring 2005

thus perpetuating a selfish social doctrine which suggests “you’re not as good as us if you’re not like us” (Correll, 2002).

The cochlear implants controversy originated in the 1980’s with the first pediatric cochlear implant surgery at the House Ear Institute in Los Angeles (Delost and Lashley, 2000). What evolved from this technological leap was a huge rift between the hearing and the non-hearing parents of deaf children. The proponents of cochlear implants support the use of this technology which can medically repair deafness in children with prelingual sensorineural hearing loss. These hearing parents are supported by medical professionals, the National Institute of Health (NIH), the Cochlear Implant Association, Inc., the American Medical Association (AMA), the American Academy of Otolaryngology-Head and Neck Surgery and the vast majority of hearing society. On the other side of this rift is the Deaf Community, whose members recognize deafness not as a disability but rather as a cultural identity.

This Community includes non-hearing parents of deaf children, many deaf educators and organizations such as the National Association of the Deaf (NAD).

Cochlear Implant Technology In the case of a sensorineural hearing loss, the tiny hair cells which typically conduct auditory signals in our cochlea have either been damaged or are absent from the inner ear. As a result, the electrical impulses which usually travel from these hair cells to auditory nerve fibers for interpretation are inefficacious; the nerve fibers are not enervated and there is no hearing response. The cochlear implant is an electrical device which proposes to remedy this incapacity by functioning in place of the damaged hair cells and providing the necessary electrical stimulation.

The implant mimics patterns of nerve activity present in the normal human ear and allows for the “spontaneous recognition of all types of sound” and eventual acquisition of speech (Eddington, 1994).

While there are many adults with the implant, the most profound improvements in hearing and speech have been observed in children. The younger the child is when the implant surgery takes place, the better the outcome.

As a result, this debate has profound consequences for those deaf people who cannot make the decision for themselves—the children.

Deafness: Pathological vs. Sociocultural Perspectives The core of the bioethical debate is rooted in the battle to define disability and understand deafness. In his

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book Seeing Voices, Oliver Sacks remarks that although society tends to think of deafness as a nuisance, disadvantage and handicap, the deaf community has joined together and views itself in an “ethnic light” as a people with “a distinctive language, sensibility and culture of their own” (Sacks, 1990; xii). This difference between deafness as handicap and deafness as culture is encompassed within two pervasive views of Deafness. The pathological view “sees deafness as an auditory deficiency, a handicap, a medical problem to be remedied so that a deaf person becomes as much like a hearing person as possible” (Skutnab-Kangas, 2000). Those who support this view have a largely medical understanding of deafness and thus desire a medical intervention. The NIH, AMA and various medical professionals urge the use of cochlear technology to ‘normalize’ deaf children by mainstreaming them into the hearing world. The efficiency of the procedure and its promises of positive results excite those parents who so strongly desire the entrance of their ‘disabled’ children into dominant culture.

The opponents of the cochlear implant possess a very different view of deafness. For them, it is Deafness with a capital D, for the ethnic community it denotes.

Their sociocultural view “sees the Deaf as a sociocultural minority, (“different,” but not deficient) which shares a series of characteristics with other minorities and where the problems the Deaf face can be seen as human rights problems” (Skutnab-Kangas, 2000). In their view, Deafness is not a disability to be ‘fixed’ medically, but rather it is a cultural identity which should be accepted and supported in our culturally diverse society. The suggestion that a Deaf individual is inferior or somehow deficient is seen as a grave insult within the Deaf Community (Sound and Fury, 2001). Supported by the NAD, the Deaf Community rejects this biased definition of what is ‘normal’ and are extremely hostile to the practice of viewing the deaf child as ‘broken,’ ‘abnormal’ and ‘fixable.’ They fear the cochlear implant as an “isolating means” which will eradicate the use of American Sign Language , hold back communication development, and ultimately threaten the rich and supportive Deaf cultural tradition.

Many opponents of the implant fear that their children will be forced to straddle the divide between two worlds. “Many deaf people and some hearing parents of deaf children speak of two worlds, one hearing and one silent, and of deafness as a birthright, part of an identity, almost something celebrated rather than a disability to be fixed” (Markon, 1998). According to this view, deafness is a subculture in which they are proud to incorporate their children. They do not see their silent world as cold and isolating but rather view it as an “enjoyable alternative to hearing” (Sound and Fury, 2001). Consequently, the cochlear implant is an affront to their cultural identification and not a welcome amelioration.

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The debate is thus one that hinges greatly on the social construction of “deafness” in America and the great divorce between the world of the hearing and the nonhearing.

The Formation of a Culture At the heart of the debate lies a pervasive ignorance and insensitivity to Deaf Culture. But how did this culture form and why does this social rift exist?

There were several reasons for the cultural germination of Deaf Culture. Historically, the deaf existed as a group of isolated and marginalized individuals, spurned by society and considered intellectually inferior due to their lack of communication abilities. As a result of this social rejection and oppression they formed a sense of community, shared circumstance and a special bond of kinship in their collective silent world. With the introduction of sign language, a group of individuals with a language quite distinct from the language of governing society galvanized into a community. In 1880 the Deaf Community organized the National Association of the Deaf, the first disability association to organize for the purpose of safeguarding the accessibility and civil rights of the deaf and hard of hearing (NAD, 2003).

Sign language, by conferring the power of an owned form of communication, was responsible for the creation of this insular but proud community and its burgeoning culture (Sacks, 1990). To those who are deaf or hard of hearing this community provided a substitute for the cold and unwelcoming hearing community. To spend a childhood in isolation and then find a community of individuals who shared the same frustrations, limitations and experiences was an incredible change. It is no surprise that a pathological view of deafness has been perceived as a threat to Deaf Culture. Such a medicalized view strikes at the very heart of deaf cultural identity; it reduces its subculture to pathology and thus undermines the pride and self-esteem the Deaf have gained within the context of the Deaf Community.

The Deaf community rebuffs a medical prescription for normalcy and frames the debate within their sociocultural view of deafness. A cultural analogy has been made in this respect: “If you were a black person, would you want to be white? Why would I want to hear? I’ve been deaf all of my life. I’m not ill. I’m just a person who can’t hear” (Markon, 1998: 2). Accordingly, the notion of deafness as a deficiency is a form of ethnocentrism, treating deafness as a medical handicap is discrimination and the idea of a cochlear implant is exceptionally offensive.

Framing the Debate Most proponents of the technology are the hearing parents of deaf children. These parents cite numerous

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reasons for their decision to use cochlear implants. The importance they place on an oral/aural approach to educating their children is based on a genuine desire to be able to communicate with their children. They choose the English language rather than sign language because it is their native cultural language. They are not members of the Deaf Community and therefore have no lingual ties to sign language nor do they have many direct or meaningful social bonds to Deaf Culture (James Parton, 1997). These parents cite low test-scores for ASL users as one reason to employ the implant. They champion the efficacy of the device, which has been proven to have a notable success rate especially as the technology is refined and improved. Proponents further emphasize that the implant provides a wealth of valuable social opportunities as hearing and speech are the means of full access to society at large. They place great import on the ability of the cochlear implant to provide for future life options in an already demanding and competitive world.

Quite significantly, these parents make a point of emphasizing that the decision is not one motivated by a selfish desire to ‘normalize’ and make children ‘just like us,’ but rather is an issue of providing as much freedom and life choices as possible for their children, something every parent wishes to do. To them, deafness threatens something of supreme importance in American society: Freedom (James Parton, 1997). In their view, their children are not being deprived of a cultural identity, and as these parents find support in a host of organization like the Alexander Graham Bell Association, the Cochlear Implant Clinical International, and the AMA , they have in a sense created their own community, a Cochlear Community.

The opponents, many of whom belong to the Deaf Community, counter many of their proponents’ justifications. They outright reject the socially-biased definition of ‘normalcy.’ They deny the data on its efficacy and continue to ask whether or not the “quality and quantity of the benefits outweigh the risks involved” (Delost and Lashley, 2000). Many are concerned with the various precautions associated with the surgery. Others cite the temporary speech delays as a reason to avoid the surgery. (Hollins, 2000) Perhaps their most pressing fear is that their children will become detached from the Deaf world while still waiting for entrance into the hearing world; instead they will exist in a form of limbo between the two. These parents fear this “liminal position” (Hollins, 2000: 189), believing it will create a class of children who are even further disadvantaged and marginalized within society.

Another significant fear expressed by deaf parents is that their children will reject them; they worry that their children will no longer want to communicate with them in ASL. They are also incredibly apprehensive of their child becoming “ashamed” of their deafness, their identity. They Penn Bioethics Journal Vol. I, Issue 1 Spring 2005

exclaim that sign is “their language,” deafness is a “beautiful, natural state,” and their children should be happy and proud to belong to Deaf culture (Sound and Fury, 2001).

Most of the anti-cochlear camp also decries the method in which hearing parents of deaf children are introduced to the diagnosis of hearing loss. These parents are swarmed with audiologists, speech therapists, and pediatricians all of whom tell them about the medical prognosis/diagnosis and disadvantages of this ‘handicap.’

They are not introduced to deaf people nor are they introduced to the concept of deafness as cultural identity.

Ultimately these parents only see deafness as a disability and not a ‘natural state.’ They falsely see cochlear implants as “instruments of success” in removing this disability (Delost and Lashley, 2000). The Deaf community argues that hearing society is wholly incapable of understanding their side of the story –they don’t recognize the ability of their children to thrive quite happily in the hearing world without the ability to hear and speak. According to them, the cochlear implant is not only “unnecessary, but the idea of the implant is oppressive” (Delost and Lashley, 2000). It confers a social bias to eradicate deafness and is interpreted as a death threat to Deaf Culture and Community.

Common Ground Although there seems to be a cultural gap between these two camps, some common ground does exist. Both proponents and opponents of the cochlear implant declare that one must separate society’s ideals from the child’s individual needs. The difference lies in what each side considers a respect for their child’s needs. The proponents say they have no reason to answer to the Deaf Community; they owe them nothing and owe their children everything, and must make a choice which will ensure the best possible future for their children. The opponents say that these parents must forget what they think society demands of their children in terms of ‘normalization’ and integration into society, but instead must foster their child’s natural abilities and develop pride and place in the Deaf Community. However, this opposing argument does not appear to recognize the children’s individual needs at all, and instead comes across as a selfish motivation. It claims to be looking out for the child’s good but is far more focused on the collective good of the Deaf Community to which these parents belong, a community they fear will be eradicated with the use of the cochlear implant.

The failure of these two camps to see eye-to-eye on the issue of cochlear implantation results from a distinct socio-cultural divide. The hearing and non-hearing parents possess two entirely incompatible views of deafness which prevent them from understanding eachother’s perspective.

Furthermore, the Deaf Community resents the cochlear

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implant as a symbol of a paternalistic control over their society, a phenomenon which has been called “audism” (Hollins, 2000: 183). For the Deaf Community the cochlear implant is simply another way for the hearing world to “dominate, restructure, and exercise authority over the deaf community,” (Hollins, 2000: 183) and perhaps even eventually uproot their culture. It would seem that as long as they regard deafness as a minority culture and the implant as the hearing majority’s tool of discrimination, there is little hope for agreement between the two camps of thought. Ultimately, a widespread acceptance of the cochlear implant must wait for a concrete resolution of the discord between the pathological and sociocultural categorizations of deafness. Without this social unification, the cultural gap between the hearing and the deaf will remain an obstacle to treatment.

References 1. Correll, Karen, Cochlear Implant case focuses debate on parental rights, iCan News Service, Oct. 2002, retrieved 23 Mar. 2003, <http://www.ican.com/news/fullpage.cfm/articleid/ 60C5C93F-4802-4E7C-B0C80ED045443882/cx/news.news/ article.cfm> 2. Delost, Shelli and Sarah Lashley, “The Cochlear Implant Controversy,” MacMurray College, 2000. Retrieved 19 March, 2003, Interdisciplinary Research Archives <http://www.drury.edu/ multinl/story.cfm?ID=2442&NLID=166> 3. Dr. Irene W. Leigh, and Dr. John Christiansen, “Cochlear Implants in Children: Ethics and Choices,” Keynote Presentation of the Cochlear Implants And Sign Language: Putting It All Together Conference Proceedings, Laurent Clerc National Deaf Education Center at Gallaudet University on April 11-12, 2002.

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Retrieved 14 March, 2003. <http:/clerccenter.gallaudet.edu/ CIEC/conference-proceedings.html#presentationA.> 4. Eddington, Donald K. Ph.D. “Cochlear Implants: Restoring Hearing to the Deaf,” The Harvard Mahoney Neuroscience Institute Letter, Volume 3:4, (Fall, 1994). Retrieved 19 Mar. 2003,<http://www.med.harvard.edu/publications/ On_The_Brain/Volume3/Number4/Cochlear.html> 5. Hogan, Anthony, “The Business of Hearing,” Health, 2,4 (October 1998) 485-501.

6. Hollins, Kathryn, “Between Two Worlds: the social implications of cochlear implantation for children born deaf,” Madness, Disability, and Social Exclusion: The archeology and anthropology of “difference,” ed. Jane Hubert, (London: Routledge, 2000) 180-195.

7. James Parton, Melody. A Parent Perspective of Cochlear Implants, 1997 FDA Hearing Speech, retrieved 12 March, 2003, <http://www.allhear.com/patients/MelodyParton.html> 8. Jones, Megan A., “Deafness as Culture: A Psychosocial Perspective,” Disabilities Studies Quarterly, Spring 2002, Volume 22, No. 2 retrieved 12 March 2003. <www.cds.hawaii.edu>.

9. Levy, Neil, “Reconsidering cochlear implants: the lessons of Martha’s Vineyard,” Bioethics, 16:2 (April, 2002) 134-153.

10. Markon, Jerry. “A Gain or a Loss? Deaf Community Split over Implants that Help Some Hear,” Newsday Nov. 1998, pp A05.

11. National Association of the Deaf (NAD), Position Statement on Cochlear Implants. NAD Cochlear Implant Committee, Approved by the NAD Board of Directors, October 6, 2000. Retrieved 20 March, 2003. <http://www.nad.org/infocenter/newsroom/ positions/CochlearImplants.html> 12. Sacks, Oliver. Seeing Voices. (New York: Vintage Books, 1990).

13. Shapiro, Joseph P. “The Deaf Celebration of Separate Culture, ”No Pity. People with Disabilities Forging a New Civil Rights Movement. (New York: Random House, 1993) Chapter 3.

14. Skutnab-Kangas, Tove. Linguistic genocide in education—or worldwide diversity and human rights? (New Jersey & London: Lawrence Erlbaum Associates, 2000) Chapter 4.

15. Sound and Fury, prod. Roger Weisberg, dir. Josh Aronson, 2001.

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