Recently, the Supreme Court of Nigeria in Tega Esabunor v Faweya & Ors (2019) LPELR 46961 (SC) dismissed an appeal seeking to quash the order of a magistrate court for the transfusion of blood to a baby. The appellants contended that the court had no jurisdiction to make theorder. The crux of the case was whether the parents’ right to consent to the child’s treatment based on religious beliefs supersedes the child’s right to live, thus reflecting the tension between a (...) parent’s right to give consent to the choice of treatment for their child, and the court’s power to override such rights through the inherent parens patriae jurisdiction of the state. The case also reflects the tension between the freedom of a parent to practise their religion and the right of a child to live, in the medical context. This article examines the findings of the Supreme Court in Tega Esabunor’s case, considering whether the court’s decision is in line with the generally accepted practice on when the state can intervene if persons with parental responsibility refuse medical treatment for an incompetent child because of religious beliefs.Cases from other jurisdictions are analysed to ascertain the position of foreign courts. It is submitted that the Supreme Court’s judgmentreflects accepted international practice regarding parental refusal of consent for medical treatment of a child. (shrink)

This article reviews the medieval law background of the parens patriae jurisdiction of the state as it has been exercised over incompetent persons who formerly were competent adults, concluding that the fiduciary standard implied in the statute De Prerogative Regis (1324), which is the basis for modern guardianship status, requires that the court and guardian adopt an attitude of respectful friendship toward the incompetent person, just as though they were to be accountable to the person himself, were he (...) to recover his faculties and become competent once more. This ficuciary responsibility, originating in the device of the "use" or trust employed for the management of the estates of lunatics, contrasts with the self-interested feudal guardianship used for the custody of "natural fools" or "idiots", who were under paternalistic arrangements. The article argues that because the determination of legal incompetence and the consequent transfer of custody of the person and property of an incompetent person to the state would result in a drastic forfeiture of liberty and property interests were it not for the fiduciary obligation owed by the state to the incompetent, the state is under an obligation to exercise its fiduciary duties in good faith and may not impose states policies or advance state interests of its own in the supervision of the affairs of incompetent persons, apart from interests arising legitimately out of the state's institutional interest in providing competent administration for the benefit of the incompetents themselves. Keywords: concept of the person, Cruzan, feudalism, guardianship, incompetent person, parens patriae CiteULike Connotea Del.icio.us What's this? (shrink)

The influx of new groups into society, such as recently established religious groups whose practices differ from societal norms, may disturb relatively stable communities. This instability is exacerbated if these practices contravene long-held fundamental societal tenets, such as the protection of children. This situation now exists in Mexico, where the country's traditional Catholic and secular values clash with those of a religion introduced from the United States, Jehovah's Witnesses. The focal point for these clashes, as it has been elsewhere, is (...) in the bioethics arena. (shrink)

Studies link involuntary outpatient commitment with improved patient outcomes, fueling debate on its ethical justification. This study compares inpatient utilization for committed outpatients in the 1990s with those who were not under outpatient civil commitment orders. Findings reveal committed outpatients had higher utilization of inpatient services and restraint episodes prior to their commitment compared with a control group. Committed outpatients also were more likely to have been on discharge status at the time of admission, have been admitted involuntarily under emergency (...) legal procedures, and have had a greater number of admissions and hospital days prior to their commitment. Following commitment, patients had fewer hospitalizations, shorter lengths of stay, fewer seclusion episodes and hours, and fewer restraint episodes and hours. Findings are discussed within the context of parens patriae and therapeutic jurisprudence, and support medical and public policy justifications for ethical uses of outpatient civil commitment laws for seriously mentally ill patients. (shrink)

Nonadherence to treatment continues to be one of psychiatry's greatest challenges. To improve adherence and thus improve the care of patients, clinicians and patients' family members sometimes resort to hiding medication in food or drink, a practice referred to as covert/ surreptitious medication. The practice of covert drug administration in food and beverages is well known in the treatment of psychiatrically ill world-wide but no prevalence rates exist. Covert medication may seem like a minor matter, but it touches on legal (...) and ethical issues of a patient's competence, autonomy, and insight. Medicating patients without their knowledge is not justifiable solely as a shortcut for institutions or families wishing to calm a troublesome patient and thus alleviate some of the burdens of care giving. The paramount principle is ensuring the well-being of a patient who lacks the competence to give informed consent. Ethically, covert/surreptitious administration can be seen as a breach of trust by the doctor or by family members who administer the drugs. Covert medication contravenes contemporary ethical practice. Legally, treatment without consent is permissible only where common law or statute provides such authority. The practice of covert administration of medication is not specifically covered in the mental health legislation in developing countries. Many of the current dilemmas in this area have come to public attention because of two important developments in medical ethics and the law - the increasing importance accorded to respect for autonomy and loss of the parens patriae jurisdiction of the courts [parens patriae means 'parent of the country'; it permitted a court to consent or refuse treatment on behalf of an 'incapacity', or alternatively to appoint a guardian with such powers]. (shrink)

This paper reports two cases in Hong Kong involving two native Chinese adolescent cancer patients (APs) who were denied their rights to consent to necessary treatments refused by their parents, resulting in serious harm. We argue that the dynamics of the ‘AP‐physician‐family‐relationship’ and the dominant role Chinese families play in medical decision‐making (MDM) are best understood in terms of the tendency to hierarchy and parental authoritarianism in traditional Confucianism. This ethic has been confirmed and endorsed by various Chinese writers from (...) Mainland China and Hong Kong. Rather than giving an unqualified endorsement to this ethic, based more on cultural sentimentalism than rational moral reasoning, we warn that a strong familism in MDM, which deprives ‘weak’ family members of rights, represents the less desirable elements of this tradition, against which healthcare professionals working in this cultural milieu need to safeguard. Specifically for APs, we suggest that parental authority and family integrity should be re‐interpreted in terms of parental responsibility and the enhancement of children's interests respectively, as done in the West. This implies that when parents refuse to consent to necessary treatment and deny their adolescent children's right to consent, doctors, as the only remaining advocates of the APs' interest, have the duty to inform the state, which can override parental refusal to enable the doctors to fulfill their professional and moral obligations. In so doing the state exercises its ‘parens patriae’ power to defend the defenseless in society and the integrity of the medical profession. (shrink)

Studies link involuntary outpatient commitment with improved patient outcomes, fueling debate on its ethical justification. This study compares inpatient utilization for committed outpatients in the 1990s with those who were not under outpatient civil commitment orders. Findings reveal committed outpatients had higher utilization of inpatient services and restraint episodes prior to their commitment compared with a control group. Committed outpatients also were more likely to have been on discharge status at the time of admission, have been admitted involuntarily under emergency (...) legal procedures, and have had a greater number of admissions and hospital days prior to their commitment. Following commitment, patients had fewer hospitalizations, shorter lengths of stay, fewer seclusion episodes and hours, and fewer restraint episodes and hours. Findings are discussed within the context of parens patriae and therapeutic jurisprudence, and support medical and public policy justifications for ethical uses of outpatient civil commitment laws for seriously mentally ill patients. (shrink)

Until recently, it was widely assumed in societies with long-established, publicly funded school systems that school attendance served the interests of children, society, and parents alike. In the United States and other common-law jurisdictions, safeguarding and promoting the independent welfare and developmental interests of every child was a public responsibility under the parens patriae doctrine. Compulsory schooling laws enacted under parens patriae authority required all persons having care and control of a child to share their custodial (...) authority with publicly certified teachers for limited periods of time. By compelling all parents to send their children to school, the state ensured that all children had access to instruction and opportunities for social, economic, and civic participation beyond what their parents alone could provide. Parents were incidentally freer to manage the competing demands of domestic life and paid employment, and the enforcement of child labor laws was greatly facilitated by efforts to ensure school attendance. While compulsory schooling laws imposed obvious limits on the custodial authority of all parents for the sake of all children, they were rarely challenged on that basis. Not so today. (shrink)

This paper reports two cases in Hong Kong involving two native Chinese adolescent cancer patients (APs) who were denied their rights to consent to necessary treatments refused by their parents, resulting in serious harm. We argue that the dynamics of the 'AP-physician-family-relationship' and the dominant role Chinese families play in medical decision-making (MDM) are best understood in terms of the tendency to hierarchy and parental authoritarianism in traditional Confucianism. This ethic has been confirmed and endorsed by various Chinese writers from (...) Mainland China and Hong Kong. Rather than giving an unqualified endorsement to this ethic, based more on cultural sentimentalism than rational moral reasoning, we warn that a strong familism in MDM, which deprives 'weak' family members of rights, represents the less desirable elements of this tradition, against which healthcare professionals working in this cultural milieu need to safeguard. Specifically for APs, we suggest that parental authority and family integrity should be re-interpreted in terms of parental responsibility and the enhancement of children's interests respectively, as done in the West. This implies that when parents refuse to consent to necessary treatment and deny their adolescent children's right to consent, doctors, as the only remaining advocates of the APs' interest, have the duty to inform the state, which can override parental refusal to enable the doctors to fulfill their professional and moral obligations. In so doing the state exercises its 'parens patriae' power to defend the defenseless in society and the integrity of the medical profession. (shrink)

When is life-sustaining treatment not in the best interests of a minimally conscious child? This is an extremely difficult question that incites seemingly intractable debate. And yet, it is the question courts in England and Wales have set out to answer in disputes about appropriate medical treatment for children.

In response to the increasing number of mentally ill people experiencing homelessness, some policy‐makers have called for the expanded use of involuntary commitment, even for individuals who are not engaging in behaviors that are immediately life‐threatening. Yet there is no evidence that involuntary commitment offers long‐term benefits, and significant reasons to believe that expanding the practice will cause harm. In addition, these proposals ignore research showing that most people with mental illness have the capacity to make medical decisions for themselves. (...) Rather than expanding the use of involuntary commitment, policy‐makers should support approaches proven to decrease the prevalence of homelessness, such as supportive housing. In addition, states should reevaluate their commitment standards for persons who pose no risk of harm to others. One promising approach is Northern Ireland's Mental Health Capacity Act of 2016, which establishes a uniform standard for imposing nonconsensual health care interventions, without any distinction between mental illnesses and other conditions in which capacity might be compromised. (shrink)

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.

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)

Leo Strauss is known primarily for reviving classical political philosophy. Strauss recovered that great tradition of thought largely lost to the West by beginning his study of classical thought with its teaching on politics rather than its metaphysics. What brought Strauss to this way of reading the classics, however, was a discovery he made as a young political scientist studying the obscure texts of Islamic and Jewish medieval political thought. In this volume, Joshua Parens examines Strauss's investigations of medieval (...) political philosophy, offering interpretations of his writings on the great thinkers of that tradition, including interpretations of his most difficult writings on Alfarabi and Maimonides. In addition Parens explicates Strauss's statements on Christian medieval thought and his argument for rejecting the Scholastic paradigm as a method for interpreting Islamic and Jewish thought. Contrasting Scholasticism with Islamic and Jewish medieval political philosophy, Parens clarifies the theme of Strauss's thought, what Strauss calls the "theologico-political problem," and reveals the significance of medieval political philosophy in the Western tradition. (shrink)

Based on the ostensible fact that truly Socratic dialogue entails a considerable inequality between participants, Parens explores Socrates’s reasons for conversing dialectically with those who are manifestly his philosophic inferiors. Contrary to many Plato scholars who emphasize Socrates’s self-reported ignorance and, hence, the “Sisyphean” character of his philosophic activity, Parens intends to show—with the help of Maimonides—that Socrates is an “overflowing” philosopher, who cannot help but share his wisdom with others.

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.

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 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.

(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.

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)

"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.

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)

: 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 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)

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)

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)

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)

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)

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 this book, author Henri Parens discusses and documents the core psychodynamics that lead groups to war. Detailing some of the psychodynamics that led from World War I to World War II and their respective aftermath, Parens addresses how major factors that gave rise to these wars must, can, and have been counteracted.

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)

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.

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)

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)