Seeing from somewhere in particular -- Embracing binocularity -- Creativity and gratitude -- Technology as vlaue-free and as value-laden -- Nobody's against true enhancement -- Comprehending persons as subjectss and as objects -- Respecting persons as subjects and as objects.

The differences between critics and proponents of enhancement technologies are easily overblown. Both sides of this debate share the moral ideal of being “authentic” to oneself. They differ in how they prefer to understand authenticity, but even this difference is not as stark as it sometimes seems.

: The differences between critics and proponents of enhancement technologies are easily overblown. Both sides of this debate share the moral ideal of being "authentic" to oneself. They differ in how they prefer to understand authenticity, but even this difference is not as stark as it sometimes seems.

I work at a research institute where the staff spends its time thinking about ethical issues that arise with progress in medicine, the life sciences, and technology. After such thinking, we make public policy recommendations. We pride ourselves in the diversity of our staff: there is a doctor, a lawyer, a linguistic anthropologist, a political scientist, a theologian, some philosophers, and so on. Both men and women do research and we are religiously diverse: Catholics, Jews, Protestants, and atheists.

The ongoing ‘enhancement’ debate pits critics of new self-shaping technologies against enthusiasts. One important thread of that debate concerns medicalization, the process whereby ‘non-medical’ problems become framed as ‘medical’ problems.In this paper I consider the charge of medicalization, which critics often level at new forms of technological self-shaping, and explain how that charge can illuminate – and obfuscate. Then, more briefly, I examine the charge of pharmacological Calvinism, which enthusiasts, in their support of technological self-shaping, often level at critics. And (...) I suggest how that charge, too, can illuminate and obfuscate.Exploring the broad charge of medicalization and the narrower counter charge of pharmacological Calvinism leads me to conclude that, as satisfying as it can be to level one of those charges at our intellectual opponents, and as tempting as it is to lie down and rest with our favorite insight, we need to gather the energy to have a conversation about the difference between good and bad forms of medicalization. Specifically, I suggest that if we consider the ‘medicalization of love,’ we can see why critics of and enthusiasts about technological self-shaping should want (and in some cases have already begun) to distinguish between good and bad forms of such medicalization. (shrink)

"In these essays, health care professionals, scholars, and members of the disability community debate the implications of prenatal testing for people with disabilitties and for parent-child relationships generally."--Cover.

Beginning with the assumptions that genetic technology will make possible the enhancement of some significant human capacities and that our society will have self-evident reasons to pursue such enhancements, this essay suggests less evident reasons to proceed with extreme caution. The essay asks: Will we, in our attempts to enhance humans by reducing their subjection to chance and change, inadvertently impoverish them? It explores how technologies aimed at enhancement might affect the good that is our experience of some forms of (...) the beautiful and the excellent, the good that is relationships of care, and the good that is diversity across the life span. In the end, it speculates about the fundamental philosophical difference that underlies the disagreement between those who would tend to embrace a project to enhance human capacities and those who would tend to criticize such a project. (shrink)

Four years ago The Hastings Center initiated a That project gave the Center staff a chance to explore one swath of the theoretical literature concerning how members of democratic regimes ought to think about and respond to the differences among themselves. Much of that literature, produced by philosophers like Charles Taylor, Martha Nussbaum, and John Kekes, is wonderfully articulate about difference in general. But it is nearly silent about how particular categories of difference actually make a difference in the lives (...) of particular individuals negotiating particular institutions. (shrink)

Bioethicists frequently call for empirical researchers to engage participants and community members in their research, but don't themselves typically engage community members in their normative research. In this article, we describe an effort to include members of the public in normative discussions about the risks, potential benefits, and ethical responsibilities of social and behavioral genomics (SBG) research. We reflect on what might—and might not— be gained from engaging the public in normative scholarship and on lessons learned about public perspectives on (...) the risks and potential benefits of SBG research and the responsible conduct and communication of such research. We also provide procedural lessons for others in bioethics who are interested in engaging members of the public in their research. (shrink)

It is hardly news to readers of this collection that in bioethics there has been a long-standing debate between people who can seem to be arguing "for" disability and people who can seem to be arguing "against" it. Those who have argued for have often been disability scholars and those who have argued against have often been philosophers of a utilitarian bent. At least since the mid 2000s, some disability scholars and some philosophers of a utilitarian bent have sought to (...) move beyond that debate, but achieving that aim is harder than it sounds. In this essay, I want to take two... (shrink)

At least since 2003, when the US President’s Council on Bioethics published Beyond Therapy: Biotechnology and the Pursuit of Happiness , there has been heated debate about the ethics of using pharmacology to reduce the intensity of emotions associated with painful memories. That debate has sometimes been conducted in language that obfuscates as much as it illuminates. I argue that the two sides of the debate actually agree that, in general, it is good to reduce the emotional intensity of memories (...) associated with traumatic events, when (as in the case of Post Traumatic Stress Disorder) the intensity of those memories is dis proportionate to the precipitating traumatic event. Both sides also agree that, in general—not as an ironclad rule—it is bad to reduce the emotional intensity of memories associated with difficult but normal human problems of living, when the intensity of the emotions is proportionate to those problems. Between those two areas of agreement, there is a zone of ambiguity, in which reasonable people, who proceed from different but equally ethical frameworks, may indeed reach different conclusions about the same set of facts. But I will argue that even in the zone of ambiguity, there is more agreement than the language favored by the different frameworks sometimes suggests. Ultimately, I suggest that if we see the extent to which the substantive differences between the two frameworks are smaller than their articulators’ language sometimes suggests, we can engage in a more productive conversation about whether a particular intervention will facilitate or diminish human flourishing. (shrink)

The rise of technologies that can inexpensively sequence entire genomes means that researchers and clinicians have access to ever vaster stores of genomic data, some of which could be of great use to research participants or patients, and most of which, at least for today, will be of little, uncertain, or no use. Those facts are essential features of a new ethical territory we are now entering with genetics research. As we explore that territory, we should try to be as (...) clear as possible about the issues at hand. Clarity about the ethical issues that delineate this new territory requires that we be wary about too hastily importing into it concepts from the old territory. We want to suggest a way in which the term “incidental findings” can impede our ability to see clearly some of the most important issues we face. To show how that term can sometimes obscure more than it illuminates, we focus on how it is being deployed in the context of research. Although it may have been useful, when considering older forms of genetic research, to speak about researchers stumbling across clinically significant findings, and although that way of speaking has certainly not yet become wholly obsolete, it is ever less appropriate as the technology becomes ever more powerful. (shrink)

The price of sequencing all the DNA in a person's genome is falling so fast that, according to one biotech leader, soon it won't cost much more than flushing a toilet. Getting all that genomic data at an ever‐lower cost excites the imaginations not only of biotech investors and researchers but also of the President and many members of Congress. They envision the data ushering in an age of “personalized medicine,” where medical care is tailored to persons’ genomes. The new (...) name “precision medicine” should not distract us from the fact that the genomic information it depends on is more complex, uncertain, and ambiguous than anyone had hoped, nor should it distract us from an important ethical point. Unfortunately, several developments of the last fifteen years suggest that, in our excitement about the technological capacity to gather genomic data at an ever lower cost, we are drifting away from what has long been a basic ethical commitment: to offer persons a process that enables them to provide informed consent before they or anyone else accesses their genetic information. (shrink)

Genomic research—including whole genome sequencing and whole exome sequencing—has a growing presence in contemporary biomedical investigation. The capacity of sequencing techniques to generate results that go beyond the primary aims of the research—historically referred to as “incidental findings”—has generated considerable discussion as to how this information should be handled—that is, whether incidental results should be returned, and if so, which ones.Federal regulations governing most human subjects research in the United States require the disclosure of “the procedures to be followed” in (...) the research as part of the informed consent process. It seems reasonable to assume—and indeed, many commentators have concluded—that genomic investigators will be expected to inform participants about, among other procedures, the prospect that incidental findings will become available and the mechanisms for dealing with them. Investigators, most of whom will not have dealt with these issues before, will face considerable challenges in framing meaningful disclosures for research participants.To help in this task, we undertook to identify the elements that should be included in the informed consent process related to incidental findings. We did this by surveying a large number of genomic researchers (n = 241) and by conducting in‐depth interviews with a smaller number of researchers (n = 28) and genomic research participants (n = 20). Based on these findings, it seems clear to us that routine approaches to informed consent are not likely to be effective in genomic research in which the prospect of incidental findings exists. Ensuring that participants’ decisions are informed and meaningful will require innovative approaches to dealing with the consent issue. We have identified four prototypical models of a consent process for return of incidental findings. (shrink)

International uproar followed the recent announcement of the birth of twin girls whose genomes had been edited with a breakthrough DNA editing-technology. This technology, called clustered regularly interspaced short palindrome repeats or CRISPR-Cas9, can alter any DNA, including DNA in embryos, meaning that changes can be passed to the offspring of the person that embryo becomes. Should we use gene editing technologies to change ourselves, our children, and future generations to come? The potential uses of CRISPR-Cas9 and other gene editing (...) technologies are unprecedented in human history. By using these technologies, we eradicate certain dreadful diseases. Altering human DNA, however, raises enormously difficult questions. Some of these questions are about safety: Can these technologies be deployed without posing an unreasonable risk of physical harm to current and future generations? Can all physical risks be adequately assessed, and responsibly managed? But gene editing technologies also raise other moral questions, which touch on deeply held, personal, cultural, and societal values: Might such technologies redefine what it means to be healthy, or normal, or cherished? Might they undermine relationships between parents and children, or exacerbate the gap between the haves and have-nots? The broadest form of this second kind of question is the focus of this book: What might gene editing--and related technologies--mean for human flourishing? In the new essays collected here, an interdisciplinary group of scholars asks age--old questions about the nature and well-being of humans in the context of a revolutionary new biotechnology--one that has the potential to change the genetic make-up of both existing people and future generations. Welcoming readers who study related issues and those not yet familiar with the formal study of bioethics, the authors of these essays open up a conversation about the ethics of gene editing. It is through this conversation that citizens can influence laws and the distribution of funding for science and medicine, that professional leaders can shape understanding and use of gene editing and related technologies by scientists, patients, and practitioners, and that individuals can make decisions about their own lives and the lives of their families. (shrink)

In 1982, the President's Commission produced its report on human gene therapy. One of that report's recommendations was to expand the Recombinant DNA Advisory Committee to the National Institutes of Health to include a subcommittee on human gene therapy. In 1984, the Human Gene Therapy Subcommittee was established, and in 1989 it produced a document—“Points to Consider for Protocols for the Transfer of Recombinant DNA into Human Subjects”—that stated the RAC's position on what sorts of protocols it would approve.In assessing (...) the impact of the President's Commission report, Alexander Capron wrote,[t]he line [the report] drew between somatic cell and germ-line therapies has shaped subsequent discussions and policy formulation. Its conclusion … that somatic cell therapy resembles medical treatment is the basic premise of the RAC subcommittee's “Points to Consider,” while the Commission's view that ethical as well as technical barriers preclude present attempts to alter germ cells continues to be generally accepted by scientists and nonscientists alike. (shrink)

In 1982, the President's Commission produced its report on human gene therapy. One of that report's recommendations was to expand the Recombinant DNA Advisory Committee to the National Institutes of Health to include a subcommittee on human gene therapy. In 1984, the Human Gene Therapy Subcommittee was established, and in 1989 it produced a document—“Points to Consider for Protocols for the Transfer of Recombinant DNA into Human Subjects”—that stated the RAC's position on what sorts of protocols it would approve.In assessing (...) the impact of the President's Commission report, Alexander Capron wrote,[t]he line [the report] drew between somatic cell and germ-line therapies has shaped subsequent discussions and policy formulation. Its conclusion … that somatic cell therapy resembles medical treatment is the basic premise of the RAC subcommittee's “Points to Consider,” while the Commission's view that ethical as well as technical barriers preclude present attempts to alter germ cells continues to be generally accepted by scientists and nonscientists alike. (shrink)

Discussions of information produced by genetics research are often guided by two mistaken theoretical moves. Enthusiasts tell us not to worry because genetic tinkering can alter only our body, never our soul; worriers suggest that discovering links between our behavior and our different bodies threatens important democratic ideas like moral equality. If we understand the body and soul to be inseparable and equality to be undiminished by difference, we can begin to take seriously the information produced by genetics research.

For over a century, scientists have sought to see through the protective shield of the human skull and into the living brain. Today, an array of technologies allows researchers and clinicians to create astonishingly detailed images of our brain's structure as well as colorful depictions of the electrical and physiological changes that occur within it when we see, hear, think and feel. These technologies—and the images they generate—are an increasingly important tool in medicine and science.Given the role that neuroimaging technologies (...) now play in biomedical research, both neuroscientists and nonexperts should aim to be as clear as possible about how neuroimages are made and what they can—and cannot—tell us. Add to this that neuroimages have begun to be used in courtrooms at both the determination of guilt and sentencing stages, that they are being employed by marketers to refine advertisements and develop new products, that they are being sold to consumers for the diagnosis of mental disorders and for the detection of lies, and that they are being employed in arguments about the nature (or absence) of powerful concepts like free will and personhood, and the need for citizens to have a basic understanding of how this technology works and what it can and cannot tell us becomes even more pressing. (shrink)

Since the start of the program to investigate the ethical, legal, and social implications (ELSI) of the Human Genome Project in 1990, many ELSI scholars have maintained that genetic testing should be used with caution because of the potential for negative psychosocial effects associated with receiving genetic information. More recently, though, some ELSI scholars have produced evidence suggesting that the original ELSI concerns were unfounded, exaggerated, or, at a minimum, misdirected. At least in the contexts that have been most studied, (...) large negative impacts have not been found in the vast majority of people studied. What might explain the discrepancy between the original hypothesized outcomes and the growing impression that large negative effects appear to be few and far between? And if the original predictions of large negative psychosocial effects were simply wrong, is it time for ELSI researchers to move on? Should genetic testing be routinized, and would it be appropriate to relax or abandon the practice of engaging patients in a process of detailed informed consent before they receive genetic information? To confront those questions, we convened a conference entitled “Looking for the Psychosocial Impacts of Genomic Information” to review what is known about the negative impacts of genetic information on a variety of populations and in multiple medical and social contexts, to explore the implications of the findings, and to consider whether future research might benefit from different methods than have been used to date. (shrink)

As in the United States, the Dutch conversation about assisted suicide emerged primarily in the context of cancer. At least in that context, before acceding to a request for assistance in dying, caregivers must be sure that the person has made a voluntary and carefully considered request, and that her suffering is unbearable and without prospect of improvement. The Dutch have recently been trying to use those criteria in the context of Alzheimer's disease. Given the wave of Alzheimer's cases poised (...) to crash onto wealthy countries, along with emerging technology to detect the disease process before symptoms appear, we should be grateful to the Dutch for that attempt. As a newcomer to this discussion, however, I was struck that those criteria may have a somewhat odd result. A patient with Alzheimer's disease can easily meet the conditions in the early stage of the disease, when one usually has the mental capacity to request assistance in dying and to make the case that one's existential suffering is unbearable. If one is in the late stage, though, it can be much harder to get such assistance because one does not have that capacity. (shrink)

Dan Callahan never tired of probing the fundamental ethical question that Socrates asked, “How should we live?” The investigation animated him. He asked, Can we, for a moment, set aside our preoccupation with better health and a longer life and think together about what we want those things for? Can we explore what a good life consists in? It turned out there was no better alibi for asking that fundamental question than taking up the seemingly more manageable ones that were (...) arising in the context of emerging medicine, science, and technology. When one asked about who should be born, or how we should die, or how we should prioritize investments in the myriad institutions that help to promote human well‐being, the question concerning what we mean by a good life was always and palpably present. (shrink)

The advent of new technologies has rekindled some hopes that it will be possible to identify genetic variants that will help to explain why individuals are different with respect to complex traits. At least one leader in the development of “whole genome sequencing”—the Chinese company BGI—has been quite public about its commitment to using the technique to investigate the genetics of intelligence in general and high intelligence in particular. Because one needs large samples to detect the small effects associated with (...) small genetic differences in the sequence of those base pairs, to make headway with the new sequencing technologies, one also needs to enlist much larger numbers of study participants than geneticists have enrolled before. In an effort to increase the size of a sample, one team of researchers approached the Center for Talented Youth at Johns Hopkins University. They wanted to gain access to records concerning participants in CTY's ongoing Study of Exceptional Talent, and they wanted to approach those individuals to see if they would be willing to share samples of their DNA.We agreed that CTY's dilemma about whether to give the researchers access to those records raised larger questions about the ethics of research into the genetics of intelligence, and we decided to hold a workshop at The Hastings Center that could examine those questions. Our purpose was to create what, borrowing from Sarah Richardson, we came to call a “transformative conversation” about research into the genetics of general cognitive ability—a conversation that would take a wide and long view and would involve a diverse group of stakeholders, including both people who have been highly critical of the research and people who engage in it. This collection of essays, which grew out of that workshop, is intended to provide an introduction to and exploration of this complex and important area. (shrink)

In America in the 1960s, ethics was out of fashion. Scientists tended to think it was as wooly and "ideological" as religion, and many philosophers agreed. But advances in the biosciences and biotechnologies made the need for ethical reflection hard to ignore. Ethics needed what today we would call rebranding.The new field devoted to questions arising with advances in the biosciences and biotechnologies would be called "bioethics." As theologian Warren Reich put it when reflecting back on the birth of bioethics (...) in the late 1960s, The field of bioethics started with the word bioethics because the word is so suggestive and so powerful; it suggests a new focus, a new bringing together of disciplines in a new way with... (shrink)

(2001). How Long Has This Been Going On? Disability Issues, Disability Studies, and Bioethics. The American Journal of Bioethics: Vol. 1, No. 3, pp. 54-55.

We began this special report by suggesting that neuroimaging technologies are tools that can, when used carefully and in conjunction with the other tools of neuroscience and psychology, help illuminate the capacities and behaviors that constitute our minds. In the course of this special report we have called attention to some basic points that are worth remembering as we encounter more and more claims about human psychology that are based on evidence from imaging technologies like fMRI.

Because people with disabilities live in a world not built for them, they are often the first to experiment with new technologies and are often expert in making choices about when to use them. People with disabilities face the question that all human beings increasingly face: to what extent will a given technology promote or thwart my flourishing? More generally, and at least as importantly, what does “flourishing” mean, and how can people use technologies to promote it? To address those (...) questions, we will build six public conversations around an activity that can be essential for flourishing: communicating, navigating, belonging, expressing, curing, and procreating. Each event will feature three persons who live with a disability or are the parents of someone who does. (shrink)