Advancements in novel neurotechnologies, such as brain computer interfaces and neuromodulatory devices such as deep brain stimulators, will have profound implications for society and human rights. While these technologies are improving the diagnosis and treatment of mental and neurological diseases, they can also alter individual agency and estrange those using neurotechnologies from their sense of self, challenging basic notions of what it means to be human. As an international coalition of interdisciplinary scholars and practitioners, we examine these challenges and make (...) recommendations to mitigate negative consequences that could arise from the unregulated development or application of novel neurotechnologies. We explore potential ethical challenges in four key areas: identity and agency, privacy, bias, and enhancement. To address them, we propose democratic and inclusive summits to establish globally-coordinated ethical and societal guidelines for neurotechnology development and application, new measures, including “Neurorights,” for data privacy, security, and consent to empower neurotechnology users’ control over their data, new methods of identifying and preventing bias, and the adoption of public guidelines for safe and equitable distribution of neurotechnological devices. (shrink)

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)

: 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.

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.

"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.

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)

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)

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)

In this consensus report by a diverse group of academics who conduct and/or are concerned about social and behavioral genomics (SBG) research, the authors recount the often-ugly history of scientific attempts to understand the genetic contributions to human behaviors and social outcomes. They then describe what the current science—including genomewide association studies and polygenic indexes—can and cannot tell us, as well as its risks and potential benefits. They conclude with a discussion of responsible behavior in the context of SBG research. (...) SBG research that compares individuals within a group according to a “sensitive” phenotype requires extra attention to responsible conduct and to responsible communication about the research and its findings. SBG research (1) on sensitive phenotypes that (2) compares two or more groups defined by (a) race, (b) ethnicity, or (c) genetic ancestry (where genetic ancestry could easily be misunderstood as race or ethnicity) requires a compelling justification to be conducted, funded, or published. All authors agree that this justification at least requires a convincing argument that a study's design could yield scientifically valid results; some authors would additionally require the study to have a socially favorable risk-benefit profile. (shrink)

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.

(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.

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)