Facing Life Campaign for Bioethics The Hastings Center We live in an age that has made the miraculous seem almost routine. Advances in science and medicine enable us to see into the genetic futures of our children, custom tailor medical treatment, enhance our natural capacities, even assemble new DNA. But our very ingenuity and prowess have provoked some of the most difficult questions we face as individuals and as a society. The questions have no easy answers, and yet the need to face them, understand their consequences, and make choices is urgent. Measured and deliberate reflection is the vital prerequisite for making sound judgments. The goal of the Campaign for Bioethics and The Hastings Center is to ensure that we think clearly about our human future, now that “human� also comes inflected with a state-of-the-art prefix, whether posthuman or transhuman. Only then can we make the best and most responsible decisions—for ourselves, our families and our communities.
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Facing Life Campaign for Bioethics The Hastings Center We live in an age that has made the miraculous seem almost routine. Advances in science and medicine enable us to see into the genetic futures of our children, custom tailor medical treatment, enhance our natural capacities, even assemble new DNA. But our very ingenuity and prowess have provoked some of the most difficult questions we face as individuals and as a society. The questions have no easy answers, and yet the need to face them, understand their consequences, and make choices is urgent. Measured and deliberate reflection is the vital prerequisite for making sound judgments. The goal of the Campaign for Bioethics and The Hastings Center is to ensure that we think clearly about our human future, now that “human� also comes inflected with a state-of-the-art prefix, whether posthuman or transhuman. Only then can we make the best and most responsible decisions—for ourselves, our families and our communities.
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Consider the human impact of these recent challenges:
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In October 2010, Robert Edwards received the Nobel Prize for his pioneering work on in vitro fertilization. Millions of children have been born thanks to that work, but it continues to raise vexing issues about cost, availability, and appropriate application.
Breakthroughs in biochemistry now enable us to redesign and synthesize genes, raising for many the specter of artificially created life. What rules should govern this new frontier?
Embryonic stem cell research promises treatment of degenerative conditions such as Parkinson’s disease and diabetes, but it is also hotly contested in debates about the human status of embryos.
Every day people in America die because vital organs are not available for transplant. How do we choose fairly among those in desperate need? Should we increase the supply of organs by legalizing their sale? By presuming that the organs of anyone who dies can be used unless the person has stated otherwise?
THE HASTINGS CENTER
Previous generations faced none of these dilemmas. But the unprecedented ability to control our biological destiny has forced us to make hard decisions about our priorities and our actions. No one wants to do harm or fail to do all the good that is within our power, but the questions are often enormously complex. The greatest risk is to act without understanding alternatives and their consequences. Bioethics is focused on the ongoing search for answers to urgent questions such as these, questions that touch us all, and the Hastings Center is the leading institution dedicated to bioethics. Making good choices requires full, reasoned discussion; insights from a range of perspectives; and breadth and clarity of vision. This is the work of The Hastings Center. In every significant health care debate, Hastings is a primary resource for clarifying what is at stake in the choices we make. The Hastings Center is an independent, nonpartisan research institute dedicated to identifying and analyzing issues in medicine, public health, and science as they affect the well-being of individuals, families, communities, and societies.
Bioethics as a field began at Hastings more than four decades ago, and since that time the center has had a profound influence. Hospitals and physicians now have standards for making decisions on end-of-life care, and individuals can get informed guidance when they need it most. Across the nation, medical students now study ethical issues in curricula first developed at Hastings. New ideas from Hastings scholars are changing how we deal with medical errors and may well reduce malpractice costs. And in every significant health care debate, Hastings is a primary resource for clarifying what is at stake in the choices we make. The Hastings Center is not an arm of government and has no religous affiliation. It sets its own research agenda. That independence is crucial, and it depends on support from individual citizens, foundations, and others concerned with the quality of our future. This document shows some of the areas in which bioethics and The Hastings Center are vitally important. We expect that many of those issues will resonate with you and help you understand why the future of The Hastings Center should be, for all of us, the highest priority. 3
Consider the human impact of these recent challenges:
2
In October 2010, Robert Edwards received the Nobel Prize for his pioneering work on in vitro fertilization. Millions of children have been born thanks to that work, but it continues to raise vexing issues about cost, availability, and appropriate application.
Breakthroughs in biochemistry now enable us to redesign and synthesize genes, raising for many the specter of artificially created life. What rules should govern this new frontier?
Embryonic stem cell research promises treatment of degenerative conditions such as Parkinson’s disease and diabetes, but it is also hotly contested in debates about the human status of embryos.
Every day people in America die because vital organs are not available for transplant. How do we choose fairly among those in desperate need? Should we increase the supply of organs by legalizing their sale? By presuming that the organs of anyone who dies can be used unless the person has stated otherwise?
THE HASTINGS CENTER
Previous generations faced none of these dilemmas. But the unprecedented ability to control our biological destiny has forced us to make hard decisions about our priorities and our actions. No one wants to do harm or fail to do all the good that is within our power, but the questions are often enormously complex. The greatest risk is to act without understanding alternatives and their consequences. Bioethics is focused on the ongoing search for answers to urgent questions such as these, questions that touch us all, and the Hastings Center is the leading institution dedicated to bioethics. Making good choices requires full, reasoned discussion; insights from a range of perspectives; and breadth and clarity of vision. This is the work of The Hastings Center. In every significant health care debate, Hastings is a primary resource for clarifying what is at stake in the choices we make. The Hastings Center is an independent, nonpartisan research institute dedicated to identifying and analyzing issues in medicine, public health, and science as they affect the well-being of individuals, families, communities, and societies.
Bioethics as a field began at Hastings more than four decades ago, and since that time the center has had a profound influence. Hospitals and physicians now have standards for making decisions on end-of-life care, and individuals can get informed guidance when they need it most. Across the nation, medical students now study ethical issues in curricula first developed at Hastings. New ideas from Hastings scholars are changing how we deal with medical errors and may well reduce malpractice costs. And in every significant health care debate, Hastings is a primary resource for clarifying what is at stake in the choices we make. The Hastings Center is not an arm of government and has no religous affiliation. It sets its own research agenda. That independence is crucial, and it depends on support from individual citizens, foundations, and others concerned with the quality of our future. This document shows some of the areas in which bioethics and The Hastings Center are vitally important. We expect that many of those issues will resonate with you and help you understand why the future of The Hastings Center should be, for all of us, the highest priority. 3
Facing Life
Assisting Reproduction
Some 250,000 babies are born each year thanks to assisted reproductive technology. Is it a luxury or a necessity?
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t has been more than 30 years since the first test-tube baby was born, and by now the women and men who have benefitted from assisted reproductive technology don’t fit any stereotypes. They may be professionals who have struggled to achieve the financial stability for child rearing or couples who have faced often painful issues of infertility. They may be young or middle-aged. But they have families thanks to research begun more than four decades ago, research that many at the time thought was tampering with nature itself. The Hastings Center was launched at nearly the same time and entered the fierce debate about this technology early on, helping physicians, families, policy makers, and insurers separate fact from religious and political opinion. Today we face challenges that spring from the very success of this treatment. With ever better results, and more and more people seeking to start families later, the growth of assisted reproduction has created a largely unregulated industry, lacking clear standards for eligibility, for the choice of
donors and other collaborators, and even for the commercial sale of sperm and eggs and the payment of surrogate mothers. While debate continues to rage on about issues from the octuplets produced by indiscriminate implantation of embryos to the “selecting” of traits for offspring, infertile couples without financial resources find themselves denied access to this technology. The United States is the one major country without overarching policies for such issues. By taking a comprehensive bioethical approach,The Hastings Center has helped fill the void, framing discussion and action. In a special issue of The Hastings Center Report, expert opinion was marshaled to tackle the thorny problem of federal regulation in an effort to outline the need and the prospects for national policy. Likewise, the Center’s Bioethics Briefing Book has become the standard resource for policy makers, journalists and citizens who need to understand the full range of challenges presented by reproductive technology.
The Impact of Hastings A forum and clearing house for new responses to technology’s challenges through a range of outlets including The Hastings Center Report
The Bioethics Briefing Book, the major comprehensive resource for bioethical issues With coverage varying greatly from state to state, IVF can often cost prospective parents thousands of dollars per cycle.
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THE HASTINGS CENTER
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Facing Life
Assisting Reproduction
Some 250,000 babies are born each year thanks to assisted reproductive technology. Is it a luxury or a necessity?
I
t has been more than 30 years since the first test-tube baby was born, and by now the women and men who have benefitted from assisted reproductive technology don’t fit any stereotypes. They may be professionals who have struggled to achieve the financial stability for child rearing or couples who have faced often painful issues of infertility. They may be young or middle-aged. But they have families thanks to research begun more than four decades ago, research that many at the time thought was tampering with nature itself. The Hastings Center was launched at nearly the same time and entered the fierce debate about this technology early on, helping physicians, families, policy makers, and insurers separate fact from religious and political opinion. Today we face challenges that spring from the very success of this treatment. With ever better results, and more and more people seeking to start families later, the growth of assisted reproduction has created a largely unregulated industry, lacking clear standards for eligibility, for the choice of
donors and other collaborators, and even for the commercial sale of sperm and eggs and the payment of surrogate mothers. While debate continues to rage on about issues from the octuplets produced by indiscriminate implantation of embryos to the “selecting” of traits for offspring, infertile couples without financial resources find themselves denied access to this technology. The United States is the one major country without overarching policies for such issues. By taking a comprehensive bioethical approach,The Hastings Center has helped fill the void, framing discussion and action. In a special issue of The Hastings Center Report, expert opinion was marshaled to tackle the thorny problem of federal regulation in an effort to outline the need and the prospects for national policy. Likewise, the Center’s Bioethics Briefing Book has become the standard resource for policy makers, journalists and citizens who need to understand the full range of challenges presented by reproductive technology.
The Impact of Hastings A forum and clearing house for new responses to technology’s challenges through a range of outlets including The Hastings Center Report
The Bioethics Briefing Book, the major comprehensive resource for bioethical issues With coverage varying greatly from state to state, IVF can often cost prospective parents thousands of dollars per cycle.
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THE HASTINGS CENTER
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Facing Life
“Normal” Children, Extreme Treatments?
We can treat young children for every abnormality from height deficiencies to behavioral problems, but should we? With increasing numbers of young people on medications, are we pursuing health or an illusory standard of normalcy?
The Impact of Hastings Comprehensive examination of the ethics of psychiatric medication of children and the role of values in medical decisions Surgically Shaping Children project, the first major ethical examination of surgical interventions to achieve normalcy Collaboration with public television station WGBH to develop a national series on ethical issues in biotechnology as they affect the family at every stage of life
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heir young son was already having problems in schoo—distracted, disruptive, unable to learn. He was given a diagnosis and medicine. At eight years old, he was now officially a medical patient in treatment. But two questions dogged his parents: did he need to be, and what would be the longterm impact—physically, socially, psychologically? This single story represents the tip of a vast iceberg of interventions, from drugs and psychotherapy to surgery, applied to children at younger and younger ages. On any given day, between six and eight million U.S. children take medication for mental health problems, with spending increases in some areas in triple digit percentages since 2000. Medical and surgical interventions can now alter conditions ranging from dwarfism to anomalous genitalia with an effectiveness unimaginable two decades ago. But this treatment explosion isn’t simply a consequence of the availability of better tools. It is also a reflection of our society’s changing sense of what is “normal” and the importance we give to that normalcy. If we are going to spend billions on costly treatments and commit our children to often painful procedures and behavior-altering therapies—therapies
that can permanently change their lives—it is our responsibility to be clear on the diagnoses, the human costs, the consequences, and above all the underlying goals. Well-being and normalcy are not the same thing. In this spirit, Hastings is home to an ongoing multidisciplinary project funded in part by the National Institute of Mental Health to establish principles for guiding public and mental health specialists in their decisions.The principles include the urgent need for alternatives to industry funding of drug research, the obligation to mitigate children’s suffering, and recognition of the role values play in diagnosing and deciding to treat childhood psychiatric illness. Hastings has focused equal attention on surgical interventions though the Surgically Shaping Children project. It is the first comprehensive presentation of the ethical and social issues raised by the proliferation of surgeries designed to make children born with physical differences look “normal.” As the New England Journal of Medicine remarked, it is not only vitally important for the profession, but a source of solace for people most involved: parents who must face grueling decisions about their children’s lives and futures.
The dramatic rise in behavioral disorder diagnoses in children calls for increased research into the pros and cons of drug therapy.
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THE HASTINGS CENTER
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Facing Life
“Normal” Children, Extreme Treatments?
We can treat young children for every abnormality from height deficiencies to behavioral problems, but should we? With increasing numbers of young people on medications, are we pursuing health or an illusory standard of normalcy?
The Impact of Hastings Comprehensive examination of the ethics of psychiatric medication of children and the role of values in medical decisions Surgically Shaping Children project, the first major ethical examination of surgical interventions to achieve normalcy Collaboration with public television station WGBH to develop a national series on ethical issues in biotechnology as they affect the family at every stage of life
T
heir young son was already having problems in schoo—distracted, disruptive, unable to learn. He was given a diagnosis and medicine. At eight years old, he was now officially a medical patient in treatment. But two questions dogged his parents: did he need to be, and what would be the longterm impact—physically, socially, psychologically? This single story represents the tip of a vast iceberg of interventions, from drugs and psychotherapy to surgery, applied to children at younger and younger ages. On any given day, between six and eight million U.S. children take medication for mental health problems, with spending increases in some areas in triple digit percentages since 2000. Medical and surgical interventions can now alter conditions ranging from dwarfism to anomalous genitalia with an effectiveness unimaginable two decades ago. But this treatment explosion isn’t simply a consequence of the availability of better tools. It is also a reflection of our society’s changing sense of what is “normal” and the importance we give to that normalcy. If we are going to spend billions on costly treatments and commit our children to often painful procedures and behavior-altering therapies—therapies
that can permanently change their lives—it is our responsibility to be clear on the diagnoses, the human costs, the consequences, and above all the underlying goals. Well-being and normalcy are not the same thing. In this spirit, Hastings is home to an ongoing multidisciplinary project funded in part by the National Institute of Mental Health to establish principles for guiding public and mental health specialists in their decisions.The principles include the urgent need for alternatives to industry funding of drug research, the obligation to mitigate children’s suffering, and recognition of the role values play in diagnosing and deciding to treat childhood psychiatric illness. Hastings has focused equal attention on surgical interventions though the Surgically Shaping Children project. It is the first comprehensive presentation of the ethical and social issues raised by the proliferation of surgeries designed to make children born with physical differences look “normal.” As the New England Journal of Medicine remarked, it is not only vitally important for the profession, but a source of solace for people most involved: parents who must face grueling decisions about their children’s lives and futures.
The dramatic rise in behavioral disorder diagnoses in children calls for increased research into the pros and cons of drug therapy.
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THE HASTINGS CENTER
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Facing Life
Enhancing Nature or Usurping It?
The Impact of Hastings “Reprogenetics: a Blueprint for Meaningful Moral Debate and Responsible Public Policy,” a report to help us look ahead and seek appropriate compromises
The most dramatic breakthroughs have created the greatest challenges: stem cell research and synthetic biology promise to take us beyond supporting life to directing and even initiating it. Are we changing the definition of the human, and what limits, if any, should society set on the new tools?
Hastings scientific contributors make clear the unique value of embryonic stem cells—2006. First in-depth study of the ethical implications of synthetic biology Congressional testimony on synthetic biology
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hat if we could direct cells to become any organ we wanted? What if we could g ene r a t e whol e organisms f rom DNA tha t we ourselves had designed? Would we enter the truly unknown territory of artificial life? The thunderclap 2010 announcement by the company Synthetic Genomics of the creation of at least a partially synthetic genome, capable of building a cell, seemed to herald exactly that. There were immediate protests against “playing God.” But these accusations had already been voiced long before over the most controversial of breakthroughs—embryonic stem cell research. It may offer a resource for growing new tissues that could never before be repaired, from nerves to heart muscle, but it is challenged by those who believe that even prior to implantation an embryo has the moral status of a person or the potential to become one. In the case of both advances, there is an urgent need for our society—and our civilizat ion—to understand and respond. The Hastings Center is leading that response. The Hastings Center’s Bioethics Forum has been an act ive sit e for debat e among ethicists and
Membership by Hastings Fellows on Presidential Commission for the Study of Bioethical Issues scientists on topics at the heart of the stem cell controversy, including restrictions on research and the practice of selling both human eggs and embryos for research. In 2000,The Hastings Center launched a major project with support from the Greenwall and Overbrook foundations to assess the e thical quest ions r aised by reproduct i ve genetic technology and research. Out of it came policy guidelines that argued against a ban on research and framed a new approach to oversight. E v en be f or e t he s ynt he t i c biology br e a k through, Hastings, with support from the Alfred P. Sloan Foundation, launched the first in-depth analysis of the technology’s ethical challenges and its pot ent ial risks and benef its. Likewise, Hastings scholars provided key testimony before Congress, and Hastings Fellows continue to serve on the President’s Commission for the Study of Bioethical Issues. They argue for a measured governmental approach to a technology still too new to hint at its dangers and rewards. The risks and impact are too significant to leave the field without guidelines, and the potential benefits are too great to demand an end to discovery. It is that complex future for which Hastings is preparing.
The sequencing of the human genome has spurred new medical interventions—and fierce controversies.
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THE HASTINGS CENTER
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Facing Life
Enhancing Nature or Usurping It?
The Impact of Hastings “Reprogenetics: a Blueprint for Meaningful Moral Debate and Responsible Public Policy,” a report to help us look ahead and seek appropriate compromises
The most dramatic breakthroughs have created the greatest challenges: stem cell research and synthetic biology promise to take us beyond supporting life to directing and even initiating it. Are we changing the definition of the human, and what limits, if any, should society set on the new tools?
Hastings scientific contributors make clear the unique value of embryonic stem cells—2006. First in-depth study of the ethical implications of synthetic biology Congressional testimony on synthetic biology
W
hat if we could direct cells to become any organ we wanted? What if we could g ene r a t e whol e organisms f rom DNA tha t we ourselves had designed? Would we enter the truly unknown territory of artificial life? The thunderclap 2010 announcement by the company Synthetic Genomics of the creation of at least a partially synthetic genome, capable of building a cell, seemed to herald exactly that. There were immediate protests against “playing God.” But these accusations had already been voiced long before over the most controversial of breakthroughs—embryonic stem cell research. It may offer a resource for growing new tissues that could never before be repaired, from nerves to heart muscle, but it is challenged by those who believe that even prior to implantation an embryo has the moral status of a person or the potential to become one. In the case of both advances, there is an urgent need for our society—and our civilizat ion—to understand and respond. The Hastings Center is leading that response. The Hastings Center’s Bioethics Forum has been an act ive sit e for debat e among ethicists and
Membership by Hastings Fellows on Presidential Commission for the Study of Bioethical Issues scientists on topics at the heart of the stem cell controversy, including restrictions on research and the practice of selling both human eggs and embryos for research. In 2000,The Hastings Center launched a major project with support from the Greenwall and Overbrook foundations to assess the e thical quest ions r aised by reproduct i ve genetic technology and research. Out of it came policy guidelines that argued against a ban on research and framed a new approach to oversight. E v en be f or e t he s ynt he t i c biology br e a k through, Hastings, with support from the Alfred P. Sloan Foundation, launched the first in-depth analysis of the technology’s ethical challenges and its pot ent ial risks and benef its. Likewise, Hastings scholars provided key testimony before Congress, and Hastings Fellows continue to serve on the President’s Commission for the Study of Bioethical Issues. They argue for a measured governmental approach to a technology still too new to hint at its dangers and rewards. The risks and impact are too significant to leave the field without guidelines, and the potential benefits are too great to demand an end to discovery. It is that complex future for which Hastings is preparing.
The sequencing of the human genome has spurred new medical interventions—and fierce controversies.
8
THE HASTINGS CENTER
9
Facing Life
When genetically-linked diseases show up across generations, parents may choose to test for risk factors before or during pregnancy.
To Test or Not to Test
Genetic testing has enabled potential parents to be far better informed about the choices they make. But commercial tests may soon be available for as little as $100, and they don’t indicate what to do with the results. Intervention may be prescient or it may be precipitous, and in some cases it is impossible. How do we cope with knowledge and its choices?
D
own syndrome, breast cancer, Huntington’s disease, Tay-Sachs disease, Alzheimer’s, colon cancer—the list of diseases linked to genetic risk factors is growing every day, and our ability to predict who may get certain diseases is advancing almost as fast. In some cases, it is even possible to predict who will respond best to certain drugs and dosages.This has inaugurated a new age in preventing many disease and treating others. We cannot always ameliorate these conditions, however, or be certain that early interventions will make a difference. And when it comes to testing for susceptibility to diseases with strong behavioral components – from diabetes to lung cancer – early genetic testing can’t tell whether people will make an effort to live healthy lives. But such tests are now becoming widely available directly to consumers, and, as Hastings Center researchers have pointing out for over a decade, we need to make sure that the information they produce does not disrupt people’s lives, that it remains confidential, and that it is not used to discriminate. Hastings has long been at the center of debates on testing. As early as 1971, when prenatal testing for diseases such as Down syndrome became possible, Hastings was sponsoring conferences on genetics and ethics. By the late 1990s, Hastings had launched what was the first studied attempt to address whether prenatal genetic testing might be discriminatory. The result was a rethinking of the impact of childhood disability on families and a vision of testing concerned as much with its impact on the patient’s sense of self as with identifying medical problems. In the same vein, in 2002 Hastings launched a large-scale project to look closely at the benefits and limits of prenatal genetic testing.Work by Hastings scholars and Fellows contributed background to the Genetic Information Nondiscrimination Act, and the publication in 2009 of “Ethics and Newborn Genetic Screening” offered a framework for the ethical and practical application of genetic testing. These examples confirm The Hasting Center’s enduring commitment to helping society make rational, ethical, and humane choices about some of the most profound technological advances in human history. 10
THE HASTINGS CENTER
The Impact of Hastings Established guiding principles for testing carriers of genetic diseases and for using genetic testing in the workplace Key contributions to the Genetic Information Nondiscrimination Act Framework for the ethical and practical application of newborn genetic screening in the face of rapidly expanding technology
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Facing Life
When genetically-linked diseases show up across generations, parents may choose to test for risk factors before or during pregnancy.
To Test or Not to Test
Genetic testing has enabled potential parents to be far better informed about the choices they make. But commercial tests may soon be available for as little as $100, and they don’t indicate what to do with the results. Intervention may be prescient or it may be precipitous, and in some cases it is impossible. How do we cope with knowledge and its choices?
D
own syndrome, breast cancer, Huntington’s disease, Tay-Sachs disease, Alzheimer’s, colon cancer—the list of diseases linked to genetic risk factors is growing every day, and our ability to predict who may get certain diseases is advancing almost as fast. In some cases, it is even possible to predict who will respond best to certain drugs and dosages.This has inaugurated a new age in preventing many disease and treating others. We cannot always ameliorate these conditions, however, or be certain that early interventions will make a difference. And when it comes to testing for susceptibility to diseases with strong behavioral components – from diabetes to lung cancer – early genetic testing can’t tell whether people will make an effort to live healthy lives. But such tests are now becoming widely available directly to consumers, and, as Hastings Center researchers have pointing out for over a decade, we need to make sure that the information they produce does not disrupt people’s lives, that it remains confidential, and that it is not used to discriminate. Hastings has long been at the center of debates on testing. As early as 1971, when prenatal testing for diseases such as Down syndrome became possible, Hastings was sponsoring conferences on genetics and ethics. By the late 1990s, Hastings had launched what was the first studied attempt to address whether prenatal genetic testing might be discriminatory. The result was a rethinking of the impact of childhood disability on families and a vision of testing concerned as much with its impact on the patient’s sense of self as with identifying medical problems. In the same vein, in 2002 Hastings launched a large-scale project to look closely at the benefits and limits of prenatal genetic testing.Work by Hastings scholars and Fellows contributed background to the Genetic Information Nondiscrimination Act, and the publication in 2009 of “Ethics and Newborn Genetic Screening” offered a framework for the ethical and practical application of genetic testing. These examples confirm The Hasting Center’s enduring commitment to helping society make rational, ethical, and humane choices about some of the most profound technological advances in human history. 10
THE HASTINGS CENTER
The Impact of Hastings Established guiding principles for testing carriers of genetic diseases and for using genetic testing in the workplace Key contributions to the Genetic Information Nondiscrimination Act Framework for the ethical and practical application of newborn genetic screening in the face of rapidly expanding technology
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Facing Life Facing Life
Organ Transplantation: A Line Too Long A million lives have been saved by organ transplants, but the waiting lists get longer each year. We may increase the supply of organs if we define the end of life differently, change consent practices, or pay donors. All are controversial.
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or a person whose survival depends on a new organ, the numbers do not offer much hope. At any given time in this country, about 110,000 people need a transplant; but in the course of a year, only slightly more than a quarter of that number will actually receive organs. Improved outcomes of transplantation should be a cause for hope, but the lines just get longer. We have national organ banks but no national consensus on how to increase the supply. Some states are taking matters into their own hands with new legislation requiring citizens to opt out of donation or be presumed potential donors. And individuals are also acting, in some cases traveling overseas to purchase organs—so-called “medical tourism.” The Hastings Center is crucial to resolving these issues. At its inception, the Center was instrumental in discussions of voluntary consent underlying adoption of the Uniform Anatomical Gift Act. Recommendations by the Center also spurred the fifty states to require discussion of transplantation with families of braindead patients. More recently, Hastings scholars have revealed the complexities of the stark problem of supply and demand. Should allocation be determined based on urgency or probable effectiveness? Should certain people be denied a place on waiting lists because of lack of insurance? Should selling certain organs be made legal or should we invest in making hospitals more effective at identifying prospective donors and working with families to get their consent? In a series of bold discussions beginning in 2008, Hastings scholars and invited contributors to The Hastings Center Report have outlined a more consistent and logical approach to defining the appropriate sequence for donation in cases of patients on life support.The immediate result would likely be an increase in organ donations. It has not ended debate, but it has brought increased clarity and new ideas to an urgent global issue.
New legislation promises to reduce the long lists of those waiting for organs, but will this be enough?
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THE HASTINGS CENTER
The Impact of Hastings Advanced the adoption of national uniform standards for organ donation Continuing leadership in the debate on voluntary consent versus presumed consent to organ donation Reduced organ trafficking by assisting Singapore’s revision of organ transplantation laws 13
Facing Life Facing Life
Organ Transplantation: A Line Too Long A million lives have been saved by organ transplants, but the waiting lists get longer each year. We may increase the supply of organs if we define the end of life differently, change consent practices, or pay donors. All are controversial.
F
or a person whose survival depends on a new organ, the numbers do not offer much hope. At any given time in this country, about 110,000 people need a transplant; but in the course of a year, only slightly more than a quarter of that number will actually receive organs. Improved outcomes of transplantation should be a cause for hope, but the lines just get longer. We have national organ banks but no national consensus on how to increase the supply. Some states are taking matters into their own hands with new legislation requiring citizens to opt out of donation or be presumed potential donors. And individuals are also acting, in some cases traveling overseas to purchase organs—so-called “medical tourism.” The Hastings Center is crucial to resolving these issues. At its inception, the Center was instrumental in discussions of voluntary consent underlying adoption of the Uniform Anatomical Gift Act. Recommendations by the Center also spurred the fifty states to require discussion of transplantation with families of braindead patients. More recently, Hastings scholars have revealed the complexities of the stark problem of supply and demand. Should allocation be determined based on urgency or probable effectiveness? Should certain people be denied a place on waiting lists because of lack of insurance? Should selling certain organs be made legal or should we invest in making hospitals more effective at identifying prospective donors and working with families to get their consent? In a series of bold discussions beginning in 2008, Hastings scholars and invited contributors to The Hastings Center Report have outlined a more consistent and logical approach to defining the appropriate sequence for donation in cases of patients on life support.The immediate result would likely be an increase in organ donations. It has not ended debate, but it has brought increased clarity and new ideas to an urgent global issue.
New legislation promises to reduce the long lists of those waiting for organs, but will this be enough?
12
THE HASTINGS CENTER
The Impact of Hastings Advanced the adoption of national uniform standards for organ donation Continuing leadership in the debate on voluntary consent versus presumed consent to organ donation Reduced organ trafficking by assisting Singapore’s revision of organ transplantation laws 13
Facing Life
Defending Human Dignity in Research
The Impact of Hastings
Each year hundreds of new drugs are tested on human beings. There are laws to insure their safety, but as the drugs become ever more precise and powerful, informing subjects and protecting them become more challenging.
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he case could not be more agonizing: two cousins developed the same fatal disease based on the same genetic mutation, but by the luck of the draw, one was eligible to test a revolutionary new treatment and one was to be the “control.” Their outcomes were starkly different; the first lived on, the second died. Today the sheer number of new drugs and devices being tested makes it difficult to develop guidelines to fit every situation. And the time and money it takes to test new drugs has added pressure to speed the process of approval. Often the severity of the diseases raises tough ethical questions: if patients in a trial face serious, even fatal, outcomes with conventional treatment, is it justifiable to give half of them what has proven ineffective, even though the public interest of arriving at reliable results warrants it? It may be that we need new standards to cover these extreme cases, and many others besides. The problem is so important that several years ago the Hastings Center developed a new forum to focus exclusively on human subject research.
THE HASTINGS CENTER
Developed guidelines to ensure privacy in AIDS research “Compassionate Use for Pharmaceuticals: An Ethical Thicket,” a science/industry/policy forum convened by Hastings
IRB [Institutional Review Board] Ethics and Human Research is the only journal of its kind. In it leading researchers and scholars rigorously examine key issues in the safety, structure, efficacy and oversight of clinical trials. They have pointed out the difficulty of making sure multisite trials keep the same ethical standards and have suggested a more efficient model for insuring that consistency. The journal has also addressed growing challenges, including the problem of informed consent when children are involved and the ethical guidelines for research on tiny amounts of genetic material. Such an issue was almost inconceivable a decade ago. The increasing call for science and government to change the rules for potentially life-saving drugs prompted Hastings in 2010 to bring together scientists and pharmaceutical industry leaders for an in-depth discussion of the ethical and practical problems of “compassionate use” of trial therapies. As one participant said, “We have to set new rules grounded in real experience, not blanket moral precept.That’s where Hastings can make a difference.”
The significant advances made in medicine due to human subject research cannot overshadow the obligation to protect the health and welfare of volunteers.
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IRB Ethics and Human Research, the leading journal devoted to protecting human subjects in research trials
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Facing Life
Defending Human Dignity in Research
The Impact of Hastings
Each year hundreds of new drugs are tested on human beings. There are laws to insure their safety, but as the drugs become ever more precise and powerful, informing subjects and protecting them become more challenging.
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he case could not be more agonizing: two cousins developed the same fatal disease based on the same genetic mutation, but by the luck of the draw, one was eligible to test a revolutionary new treatment and one was to be the “control.” Their outcomes were starkly different; the first lived on, the second died. Today the sheer number of new drugs and devices being tested makes it difficult to develop guidelines to fit every situation. And the time and money it takes to test new drugs has added pressure to speed the process of approval. Often the severity of the diseases raises tough ethical questions: if patients in a trial face serious, even fatal, outcomes with conventional treatment, is it justifiable to give half of them what has proven ineffective, even though the public interest of arriving at reliable results warrants it? It may be that we need new standards to cover these extreme cases, and many others besides. The problem is so important that several years ago the Hastings Center developed a new forum to focus exclusively on human subject research.
THE HASTINGS CENTER
Developed guidelines to ensure privacy in AIDS research “Compassionate Use for Pharmaceuticals: An Ethical Thicket,” a science/industry/policy forum convened by Hastings
IRB [Institutional Review Board] Ethics and Human Research is the only journal of its kind. In it leading researchers and scholars rigorously examine key issues in the safety, structure, efficacy and oversight of clinical trials. They have pointed out the difficulty of making sure multisite trials keep the same ethical standards and have suggested a more efficient model for insuring that consistency. The journal has also addressed growing challenges, including the problem of informed consent when children are involved and the ethical guidelines for research on tiny amounts of genetic material. Such an issue was almost inconceivable a decade ago. The increasing call for science and government to change the rules for potentially life-saving drugs prompted Hastings in 2010 to bring together scientists and pharmaceutical industry leaders for an in-depth discussion of the ethical and practical problems of “compassionate use” of trial therapies. As one participant said, “We have to set new rules grounded in real experience, not blanket moral precept.That’s where Hastings can make a difference.”
The significant advances made in medicine due to human subject research cannot overshadow the obligation to protect the health and welfare of volunteers.
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IRB Ethics and Human Research, the leading journal devoted to protecting human subjects in research trials
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facing Life
Health Care: Right or Privilege?
Sandy Flanigan of Brentwood,Tennessee’s battle with acute lymphocytic leukemia has placed her and her family in a state of financial crisis.
Health care reform may focus on “how,” but the tougher questions concern our priorities: quality, accessibility, economy, choice. They are yet to be answered.
T The Impact of Hastings
Connecting American Values with Health Reform, a major publication contributing to health care reform New options for controlling cost laid out in Taming the Beloved Beast: How Medical Technology Costs are Destroying our System A possible avenue to lowering the level of malpractice litigation opened up by the innovative study After Harm: Medical Error and the Ethics of Forgiveness
The Health Care Cost Monitor, the only blog devoted to cost control and named one of the best online information sources on health care reform
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he story of a single individual—out of work, dropped from health coverage, facing a serious illness and unable to afford care—can galvanize the emotions of people everywhere. Changing the situation is proving far more difficult. Health care reform remains the most controversial political topic in America, even though almost everyone seems to want it. What can be done? The Hastings Center has cut through technical complexities and ideological rhetoric to put the issue in the most fundamental terms: core values. In its path-breaking report Connecting American Values with Health Reform (2009), Hastings laid out what is at stake in the various proposals for delivery systems and payment options in the alphabet soup of potential programs. Do we believe that health care is a basic right, available equally to all citizens? Or do we think it must be market driven, varying in quality according to the ability to pay? Hastings has pointed to the importance of quality and physician integrity, the need to balance individualism and privacy with justice and fairness, and the stewardship responsibility of insuring any future system is fair and sustainable. Concern about sustainability has motivated another important initiative, a major statement by Hastings founder Daniel Callahan Taming the Beloved Beast: How Medical Technology Costs are Destroying Our Health Care System. The much discussed book pinpoints medical technology as the main driver of rising health care costs and calls for some radical rethinking that looks more and more like common sense: emphasizing care-oriented rather than cure-oriented medicine, shifting the balance from specialty to primary care, and paying more attention to emerging conditions such as diabetes and asthma and to debilitating ones such as arthritis and poor mental health. In the final analysis, the question reform must answer is not just what kind of care we want but in what kind of society we want to live.
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facing Life
Health Care: Right or Privilege?
Sandy Flanigan of Brentwood,Tennessee’s battle with acute lymphocytic leukemia has placed her and her family in a state of financial crisis.
Health care reform may focus on “how,” but the tougher questions concern our priorities: quality, accessibility, economy, choice. They are yet to be answered.
T The Impact of Hastings
Connecting American Values with Health Reform, a major publication contributing to health care reform New options for controlling cost laid out in Taming the Beloved Beast: How Medical Technology Costs are Destroying our System A possible avenue to lowering the level of malpractice litigation opened up by the innovative study After Harm: Medical Error and the Ethics of Forgiveness
The Health Care Cost Monitor, the only blog devoted to cost control and named one of the best online information sources on health care reform
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he story of a single individual—out of work, dropped from health coverage, facing a serious illness and unable to afford care—can galvanize the emotions of people everywhere. Changing the situation is proving far more difficult. Health care reform remains the most controversial political topic in America, even though almost everyone seems to want it. What can be done? The Hastings Center has cut through technical complexities and ideological rhetoric to put the issue in the most fundamental terms: core values. In its path-breaking report Connecting American Values with Health Reform (2009), Hastings laid out what is at stake in the various proposals for delivery systems and payment options in the alphabet soup of potential programs. Do we believe that health care is a basic right, available equally to all citizens? Or do we think it must be market driven, varying in quality according to the ability to pay? Hastings has pointed to the importance of quality and physician integrity, the need to balance individualism and privacy with justice and fairness, and the stewardship responsibility of insuring any future system is fair and sustainable. Concern about sustainability has motivated another important initiative, a major statement by Hastings founder Daniel Callahan Taming the Beloved Beast: How Medical Technology Costs are Destroying Our Health Care System. The much discussed book pinpoints medical technology as the main driver of rising health care costs and calls for some radical rethinking that looks more and more like common sense: emphasizing care-oriented rather than cure-oriented medicine, shifting the balance from specialty to primary care, and paying more attention to emerging conditions such as diabetes and asthma and to debilitating ones such as arthritis and poor mental health. In the final analysis, the question reform must answer is not just what kind of care we want but in what kind of society we want to live.
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Facing Life
Who Decides and How?
Informed consent is fundamental to modern medical treatment, but a patient may not be able to be “informed” at the moment when choice is crucial. Is there a better guide for decision making?
62%
Dr. Leakey declared, “We must now redefine man, redefine tool or accept chimpanzees as human!”
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arents-to-be must confront the prospect of giving birth to a severely, perhaps fatally, disabled child. A diabetic patient refuses an amputation whose delay will likely cause his death, and doctors suspect he is not mentally competent. A patient in a vegetative state might provide a vitally needed organ for transplant, but the decision to remove life support is fraught with legal and ethical complications. These situations and the high-profile, bitterly contested cases of Karen Schiavo and Nancy Cruzan point to the challenge of bringing order, consistency and compassion to the most difficult medical decisions. The range of issues and the critical importance of clarifying how medical decisions are made prompted Hastings to devote two issues of The Hastings Center Report and many additional discussions to critical problems relating to who decides on treatment and how. In our society, the issue of consent underlies almost every medical transaction, from inoculations to physician-assisted death, and from organ donation to clinical research trials of new medicines. It has spurred the rise of advance directives to express patients’ wishes about end-of life situations. But the experts convened in the preparation of the Report point out that what is written in the past and desired in the present may be two different things, and if someone else has to decide, the choice must be made by interpretation. Such gray areas cannot be legislated, but is there an alternative to a simplistic version of patient autonomy? The Hastings Center’s work suggests there is. It involves decisions made not by direct reference to explicit wishes, which may not even apply, but rather to a discussion that can take place among patients, family, physicians and even others who might be affected. In the end, this implies not only a different model of decision-making but also a different view of the person—not an isolated agent solely responsible for each choice, but a social being who lives — and dies—among others.
The Impact of Hastings Task force contributing to the acceptance of recognized neurological criteria for what is now called “brain death”
Toward a New Model for Health Care Decision-Making, a groundbreaking Hastings Center Report Hasting Center’s Guidelines cited in conjunction with the U.S. Supreme Court’s landmark “right to die” decision in the case of Nancy Cruzan
With the physical and emotional strain of care-giving can come the added burden of making decisions for a loved one who is no longer able to do so.
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THE HASTINGS CENTER
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Facing Life
Who Decides and How?
Informed consent is fundamental to modern medical treatment, but a patient may not be able to be “informed” at the moment when choice is crucial. Is there a better guide for decision making?
62%
Dr. Leakey declared, “We must now redefine man, redefine tool or accept chimpanzees as human!”
P
arents-to-be must confront the prospect of giving birth to a severely, perhaps fatally, disabled child. A diabetic patient refuses an amputation whose delay will likely cause his death, and doctors suspect he is not mentally competent. A patient in a vegetative state might provide a vitally needed organ for transplant, but the decision to remove life support is fraught with legal and ethical complications. These situations and the high-profile, bitterly contested cases of Karen Schiavo and Nancy Cruzan point to the challenge of bringing order, consistency and compassion to the most difficult medical decisions. The range of issues and the critical importance of clarifying how medical decisions are made prompted Hastings to devote two issues of The Hastings Center Report and many additional discussions to critical problems relating to who decides on treatment and how. In our society, the issue of consent underlies almost every medical transaction, from inoculations to physician-assisted death, and from organ donation to clinical research trials of new medicines. It has spurred the rise of advance directives to express patients’ wishes about end-of life situations. But the experts convened in the preparation of the Report point out that what is written in the past and desired in the present may be two different things, and if someone else has to decide, the choice must be made by interpretation. Such gray areas cannot be legislated, but is there an alternative to a simplistic version of patient autonomy? The Hastings Center’s work suggests there is. It involves decisions made not by direct reference to explicit wishes, which may not even apply, but rather to a discussion that can take place among patients, family, physicians and even others who might be affected. In the end, this implies not only a different model of decision-making but also a different view of the person—not an isolated agent solely responsible for each choice, but a social being who lives — and dies—among others.
The Impact of Hastings Task force contributing to the acceptance of recognized neurological criteria for what is now called “brain death”
Toward a New Model for Health Care Decision-Making, a groundbreaking Hastings Center Report Hasting Center’s Guidelines cited in conjunction with the U.S. Supreme Court’s landmark “right to die” decision in the case of Nancy Cruzan
With the physical and emotional strain of care-giving can come the added burden of making decisions for a loved one who is no longer able to do so.
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THE HASTINGS CENTER
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Facing Life
At Life’s Conclusion
Prolonging life may not always mean improving it, especially as death gets closer. With an aging population, families often face the toughest of choices without help.
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t is a situation more and more Americans face: a loved one is close to death and no option for a cure remains. The question looms: when is enough enough? The most difficult choice many pa t ients and their f amilies have to make is not how to treat a lif e-threatening condition but whether to treat it. By now it is common knowledge that a vast ly dispropor t ionat e share of health care resources go to treat people at the very end of their lives. The crucial issue is to determine what is the benefit of further treatment to the patient’s well-being. In spite of informed consent and living wills, the question is seldom easily answered. In an emergency, a patient may not be able to express his/her wishes, much less give consent, and technology has enabled a prolongation of life far beyond any hope of even partial recovery. Against the backdrop of common end-of-lifedecisions there are also extreme cases. With severe brain injuries, new understanding of coma and brain function may justify keeping life and hope alive. And these questions can be just as urgent at the beginning of life as at the end of it, when the possibility of a newborn’s future hangs in the balance.
Before The Hastings Center began to study this growing problem, individuals, families, and health care providers themselves had no place to turn for guidance and no set of standards to follow in extreme situations. Most decisions were made ad hoc. In 1987, Hastings issued the first ethical guidelines on endof-life care. The goal was to encourage decisions before patients faced death. That effort has been a profound success, but the guidelines could not anticipate the changes in treatment and the complexity of current health care. Hastings has revised its landmark document as Ethics Guidelines for DecisionMaking About Life-Sustaining Treatment and Care Near the End of Life. Just as important, it has developed new means for making the guidelines accessible to all health professionals. New media and web-based technology now make it possible to walk users through the application of these standards and to gather information about their effectiveness. Grounded in experience, responsive to changing realities, and sensitive to the needs of individual human beings, this technology promises to be the advisor every provider needs.
The Impact of Hastings First guidelines on the ethical management of end-of-life care “What Do We Owe the Elderly? Allocating Social and Health Care Resources,” an international research project providing recommendations for the care of the elderly Collaboration on a nationwide medical education program “Decisions Near the End of Life,” reaching providers in 33 states Revised and expanded guidelines and comprehensive dissemination nationally and worldwide via web and electronic formats
Centenarian Ruby Wolfe in her kitchen in Grafton, West Virginia.
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THE HASTINGS CENTER
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Facing Life
At Life’s Conclusion
Prolonging life may not always mean improving it, especially as death gets closer. With an aging population, families often face the toughest of choices without help.
I
t is a situation more and more Americans face: a loved one is close to death and no option for a cure remains. The question looms: when is enough enough? The most difficult choice many pa t ients and their f amilies have to make is not how to treat a lif e-threatening condition but whether to treat it. By now it is common knowledge that a vast ly dispropor t ionat e share of health care resources go to treat people at the very end of their lives. The crucial issue is to determine what is the benefit of further treatment to the patient’s well-being. In spite of informed consent and living wills, the question is seldom easily answered. In an emergency, a patient may not be able to express his/her wishes, much less give consent, and technology has enabled a prolongation of life far beyond any hope of even partial recovery. Against the backdrop of common end-of-lifedecisions there are also extreme cases. With severe brain injuries, new understanding of coma and brain function may justify keeping life and hope alive. And these questions can be just as urgent at the beginning of life as at the end of it, when the possibility of a newborn’s future hangs in the balance.
Before The Hastings Center began to study this growing problem, individuals, families, and health care providers themselves had no place to turn for guidance and no set of standards to follow in extreme situations. Most decisions were made ad hoc. In 1987, Hastings issued the first ethical guidelines on endof-life care. The goal was to encourage decisions before patients faced death. That effort has been a profound success, but the guidelines could not anticipate the changes in treatment and the complexity of current health care. Hastings has revised its landmark document as Ethics Guidelines for DecisionMaking About Life-Sustaining Treatment and Care Near the End of Life. Just as important, it has developed new means for making the guidelines accessible to all health professionals. New media and web-based technology now make it possible to walk users through the application of these standards and to gather information about their effectiveness. Grounded in experience, responsive to changing realities, and sensitive to the needs of individual human beings, this technology promises to be the advisor every provider needs.
The Impact of Hastings First guidelines on the ethical management of end-of-life care “What Do We Owe the Elderly? Allocating Social and Health Care Resources,” an international research project providing recommendations for the care of the elderly Collaboration on a nationwide medical education program “Decisions Near the End of Life,” reaching providers in 33 states Revised and expanded guidelines and comprehensive dissemination nationally and worldwide via web and electronic formats
Centenarian Ruby Wolfe in her kitchen in Grafton, West Virginia.
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THE HASTINGS CENTER
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A Partial List of the Issues Where The Hastings Center is Having an Impact
The Hastings Center
Bioethics and our Common Future
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he Hastings Center has developed a multidimensional model for clarifying issues and improving decisions.. The effectiveness of this model accounts in part for Hastings’ significant impact over more than four decades. First, the center supports a core group of top scholars on its campus, enabling them to focus intensively on the problems of bioethics, including emerging problems like synthetic biology. They work without political agendas or academic constraints. Second, Hastings convenes experts from a variety of fields around specific topics. These visitors may gather many times in the course of a project and the interdisciplinary discussions they lead can form the basis for recommendations, briefing papers, curricula and guidelines for practice. Third, Hastings staff regularly testify and advise members of congress, government panels and other groups about current issues in bioethics.This role is vital in dispelling misinformation, cutting through partisan arguments and setting agendas for action. At the same time,The Hastings Center has developed the most diverse and authoritative information source for bioethics in the world. Its key elements are the Bioethics Briefing Book, used by journalists and
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THE HASTINGS CENTER
policymakers as the one-stop source for all the key issues in the field; The Hastings Center Report, which presents the latest work by scholars in a language and format accessible to the public; special reports focused on single complex topics; and the web-based Bioethics Forum, where debate is promoted so consensus can emerge. The Hastings Center has a growing role in promoting bioethics and informing people around the globe. It collaborates with Yale University in a leading program on ethics and policy, and it has established a program with National University of Singapore’s Centre for Biomedical Ethics to bring clinical, scientific, and other professionals to Hastings to develop new approaches for teaching bioethics. Hastings has also entered into a partnership with WGBH and PBS to produce the television series “Shaping Life: Stories from the Bioethical Frontier,” presenting the key issues of bioethics to a wide public. This last initiative underscores the increasingly public role of The Hastings Center. Health care debates are central to individual lives and to the future of the nation—indeed to the entire world. The Hastings Center is a true forum—physical and virtual—where ideas and knowledge can shape decision.
Abortion Assisted Reproduction Brain Injury and Vegetative States Cloning DNA and Law Enforcement End-of-Life Care Enhancing Humans Family Caregiving Genetic Testing and Screening Health Care Reform Medical Errors Newborn Screening Organ Transplantation Personalized Medicine and Genomics Physician-Assisted Death Sports Enhancement Stem Cells Synthetic Biology Torture: the Bioethics Perspective
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A Partial List of the Issues Where The Hastings Center is Having an Impact
The Hastings Center
Bioethics and our Common Future
T
he Hastings Center has developed a multidimensional model for clarifying issues and improving decisions.. The effectiveness of this model accounts in part for Hastings’ significant impact over more than four decades. First, the center supports a core group of top scholars on its campus, enabling them to focus intensively on the problems of bioethics, including emerging problems like synthetic biology. They work without political agendas or academic constraints. Second, Hastings convenes experts from a variety of fields around specific topics. These visitors may gather many times in the course of a project and the interdisciplinary discussions they lead can form the basis for recommendations, briefing papers, curricula and guidelines for practice. Third, Hastings staff regularly testify and advise members of congress, government panels and other groups about current issues in bioethics.This role is vital in dispelling misinformation, cutting through partisan arguments and setting agendas for action. At the same time,The Hastings Center has developed the most diverse and authoritative information source for bioethics in the world. Its key elements are the Bioethics Briefing Book, used by journalists and
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THE HASTINGS CENTER
policymakers as the one-stop source for all the key issues in the field; The Hastings Center Report, which presents the latest work by scholars in a language and format accessible to the public; special reports focused on single complex topics; and the web-based Bioethics Forum, where debate is promoted so consensus can emerge. The Hastings Center has a growing role in promoting bioethics and informing people around the globe. It collaborates with Yale University in a leading program on ethics and policy, and it has established a program with National University of Singapore’s Centre for Biomedical Ethics to bring clinical, scientific, and other professionals to Hastings to develop new approaches for teaching bioethics. Hastings has also entered into a partnership with WGBH and PBS to produce the television series “Shaping Life: Stories from the Bioethical Frontier,” presenting the key issues of bioethics to a wide public. This last initiative underscores the increasingly public role of The Hastings Center. Health care debates are central to individual lives and to the future of the nation—indeed to the entire world. The Hastings Center is a true forum—physical and virtual—where ideas and knowledge can shape decision.
Abortion Assisted Reproduction Brain Injury and Vegetative States Cloning DNA and Law Enforcement End-of-Life Care Enhancing Humans Family Caregiving Genetic Testing and Screening Health Care Reform Medical Errors Newborn Screening Organ Transplantation Personalized Medicine and Genomics Physician-Assisted Death Sports Enhancement Stem Cells Synthetic Biology Torture: the Bioethics Perspective
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Facing Life
The Campaign for Bioethics The Hastings Center
The Hastings Center has launched an ambitious campaign to raise $20 Million with one clear purpose: to insure our ability to be an independent source of clear thinking and new ideas, now and in the future. Hastings has strong unrestricted support from individuals and others, and it has been extremely successful at securing grants for its work from foundations and the federal government. That success is a testimony to the timeliness and quality of its work. But it also holds a warning. Hastings’ important work is often far in advance of unfolding events, identifying issues early so there can be a resource for future debate. But looking ahead is the most difficult kind of work to fund. It is easier to set a research agenda by what is already
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THE HASTINGS CENTER
happening and according to what others think is significant. If this were the only path, The Hastings Center would never have been formed, and bioethics as a field would not have been prepared to move to the center of public debate and action. The Campaign to raise $ 20 million seeks to add both endowment and spendable money that can be directed toward the most innovative work, from research to electronic communication, from groundbreaking publications to international collaborations. The Hastings Center is the most important force for bioethics thinking in the nation, and its role is only going to grow. The nation and the world need an independent Hastings more than ever. The Campaign will ensure it.
CONTACT Lyn D.Traverse Director of Development The Hastings Center 21 Malcolm Gordon Road Garrison, NY 10524 traversel@thehastingscenter.org 845-424-4040, ext. 230
PRODUCTION This publication was produced by the Hastings Center and Jan Krukowski & Company/ Generation
Photos 5 Brand New Images / Getty Images 7 Samantha Contis 8-9 Josh Westich / Corbis 10-11 Stephanie Sinclair / VII Photo Agency 12-13 Jonathan Ross / Corbis 15 Donald Weber / VII Photo Agency 16-17 Jessica Dimmock / VII Photo Agency 18-19 Peter van Agtael / Magnum Photos 20-21 Ed Kashi / VII Photo Agency 23 Kieran Scott / Getty Images
Facing Life
The Campaign for Bioethics The Hastings Center
The Hastings Center has launched an ambitious campaign to raise $20 Million with one clear purpose: to insure our ability to be an independent source of clear thinking and new ideas, now and in the future. Hastings has strong unrestricted support from individuals and others, and it has been extremely successful at securing grants for its work from foundations and the federal government. That success is a testimony to the timeliness and quality of its work. But it also holds a warning. Hastings’ important work is often far in advance of unfolding events, identifying issues early so there can be a resource for future debate. But looking ahead is the most difficult kind of work to fund. It is easier to set a research agenda by what is already
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THE HASTINGS CENTER
happening and according to what others think is significant. If this were the only path, The Hastings Center would never have been formed, and bioethics as a field would not have been prepared to move to the center of public debate and action. The Campaign to raise $ 20 million seeks to add both endowment and spendable money that can be directed toward the most innovative work, from research to electronic communication, from groundbreaking publications to international collaborations. The Hastings Center is the most important force for bioethics thinking in the nation, and its role is only going to grow. The nation and the world need an independent Hastings more than ever. The Campaign will ensure it.
CONTACT Lyn D.Traverse Director of Development The Hastings Center 21 Malcolm Gordon Road Garrison, NY 10524 traversel@thehastingscenter.org 845-424-4040, ext. 230
PRODUCTION This publication was produced by the Hastings Center and Jan Krukowski & Company/ Generation
Photos 5 Brand New Images / Getty Images 7 Samantha Contis 8-9 Josh Westich / Corbis 10-11 Stephanie Sinclair / VII Photo Agency 12-13 Jonathan Ross / Corbis 15 Donald Weber / VII Photo Agency 16-17 Jessica Dimmock / VII Photo Agency 18-19 Peter van Agtael / Magnum Photos 20-21 Ed Kashi / VII Photo Agency 23 Kieran Scott / Getty Images
the hastings center 21 Malcolm Gordon Road Garrison, NY 10524 845-424-4040