In a project The Hastings Center is now running on the future of prenatal testing, we are encountering clear examples, both in established law and in the practices of individual providers, of failures to respect women's reproductive autonomy: when testing is not offered to certain demographics of women, for instance, or when the choices of women to terminate or continue pregnancies are prohibited or otherwise not supported. But this project also raises puzzles for reproductive autonomy. We have learned that some (...) clinicians and patients do not discuss the fact that prenatal testing can lead to a decision about whether to terminate a pregnancy—they just don't talk about it. And while the decision whether to agree to prenatal screening and diagnostic testing is to be made with women's free and informed consent, many screening tests have been routinized in such a way that some women do not even recall agreeing to testing, while others feel that agreeing to testing is what their clinicians expect of them or that the testing is necessary to protect themselves and their families from the significant financial hardship of raising a child with a disability. In the face of these pressures, can one really say that women are freely choosing to undergo testing or are freely choosing to continue or terminate a pregnancy following receipt of test results? The reality of these pressures is requiring us to consider expanding the scope of our investigation beyond the clinical encounter to the broader context—to think harder about what reproductive autonomy means and how best to enhance it. (shrink)

Many scientists and doctors hope that affordable genome sequencing will lead to more personalized medical care and improve public health in ways that will benefit children, families, and society more broadly. One hope in particular is that all newborns could be sequenced at birth, thereby setting the stage for a lifetime of medical care and self‐directed preventive actions tailored to each child's genome. Indeed, commentators often suggest that universal genome sequencing is inevitable. Such optimism can come with the presumption that (...) discussing the potential limits, cost, and downsides of widespread application of genomic technologies is pointless, excessively pessimistic, or overly cautious. We disagree. Given the pragmatic challenges associated with determining what sequencing data mean for the health of individuals, the economic costs associated with interpreting and acting on such data, and the psychosocial costs of predicting one's own or one's child's future life plans based on uncertain testing results, we think this hope and optimism deserve to be tempered.In the analysis that follows, we distinguish between two reasons for using sequencing: to diagnose individual infants who have been identified as sick and to screen populations of infants who appear to be healthy. We also distinguish among three contexts in which sequencing for either diagnosis or screening could be deployed: in clinical medicine, in public health programs, and as a direct‐to‐consumer service. Each of these contexts comes with different professional norms, policy considerations, and public expectations. Finally, we distinguish between two main types of genome sequencing: targeted sequencing, where only specific genes are sequenced or analyzed, and whole‐exome or whole‐genome sequencing, where all the DNA or all the coding segments of all genes are sequenced and analyzed.In a symptomatic newborn, targeted or genome‐wide sequencing can help guide other tests for diagnosis or for specific treatment that is urgently needed. Clinicians use the infant's symptoms (or phenotype) to interrogate the sequencing data. These same complexities and uncertainties, however, limit the usefulness of genome‐wide sequencing as a population screening tool. While we recognize considerable benefit in using targeted sequencing to screen for or detect specific conditions that meet the criteria for inclusion in newborn screening panels, use of genome‐wide sequencing as a sole screening tool for newborns is at best premature. We conclude that sequencing technology can be beneficially used in newborns when that use is nuanced and attentive to context. (shrink)

This article is the lead piece in a special report that presents the results of a bioethical investigation into chimeric research, which involves the insertion of human cells into nonhuman animals and nonhuman animal embryos, including into their brains. Rapid scientific developments in this field may advance knowledge and could lead to new therapies for humans. They also reveal the conceptual, ethical, and procedural limitations of existing ethics guidance for human‐nonhuman chimeric research. Led by bioethics researchers working closely with an (...) interdisciplinary work group, the investigation focused on generating conceptual clarity and identifying improvements to governance approaches, with the goal of helping scholars, funders, scientists, institutional leaders, and oversight bodies (embryonic stem cell research oversight [ESCRO] committees and institutional animal care and use committees [IACUCs]) deliver principled and trustworthy oversight of this area of science. The article, which focuses on human‐nonhuman animal chimeric research that is stem cell based, identifies key ethical issues in and offers ten recommendations regarding the ethics and oversight of this research. Turning from bioethics’ previous focus on human‐centered questions about the ethics of “humanization” and this research's potential impact on concepts like human dignity, this article emphasizes the importance of nonhuman animal welfare concerns in chimeric research and argues for less‐siloed governance and oversight and more‐comprehensive public communication. (shrink)

As new parents quickly learn, parenting always involves choosing your battles. Ideally, parents have the freedom to make those moral choices without the prejudice of an unreasonable or premature inflicted ought. Resolving the predictive uncertainties of genomic information is the professional responsibility of the biomedical community, just as clarifying the impact of global warming or assessing the risks of rising multidrug resistance is the responsibility of similar specialists. Until sequencing can give parents clear and meaningful information that they can use (...) to protect their children without also burdening parents with uncertain findings about which little if anything can be done, it makes no sense to impute an obligation for them to seek it out. To do so not only increases the mental and emotional burden on parents but also distorts the scope of parental responsibility in ways that undermine parents’ capacity to play their immediate role as the nurturers of a new life. (shrink)

When the use of CRIsPR-Cas9 to edit DNA was first reported in 2012, it was quickly heralded by scientists, policymakers, and journalists as a transformative technology. CRISPR-Cas9 provides the means to change DNA in ways that either were not generally possible using previous genetic technologies or that were orders of magnitude more laborious or inefficient to undertake. CRISPR's possible applications were readily apparent and seemingly endless, from supercharging laboratory research to modifying insects that transmit disease to eliminating genetic conditions. By (...) 2015, Wired magazine was calling the discovery "The Genesis Engine."Against a backdrop of disappointing results from gene transfer... (shrink)

One argument Robert and Baylis do not raise in their article on the creation of interspecies chimeras using human cellular material is that the creation of these chimeras would, or could, offend human dignity. Yet, human dignity is one of the most common concerns raised in public debates, academic arguments, and policy documents regarding biotechnology in general, and the creation animal-human chimeras in particular. … The concept is ill-defined within bioethics and … risks being dismissed as meaningless or uselessly vague. (...) However, this lack of definition should not yet cause us to abandon or ignore human dignity. At least in arguments about creating chimeras, an examination of what may be meant by appeals to human dignity can uncover important concerns or arguments that are not captured by other formulations of the debate. (shrink)

Since 1980, the number of twin births in the United States has increased 76 percent, and the number of triplets or higher‐order multiples has increased over 400 percent. These increases are due in part to increased maternal age, which is associated with spontaneous twinning. But the primary reason for these increases is that more and more people are undergoing fertility treatment. Despite an emerging (but not absolute) consensus in the medical literature that multiples, including twins, should be a far less (...) frequent outcome of fertility treatment, American clinicians currently practice fertility medicine in ways likely to result in twins and, occasionally, triplets—often, they tell us, at the request of their patients. At first blush, one might conclude that these practice patterns show that patients and their doctors have weighed the risks associated with twins against the benefits of swiftly completing their families and decided that the risks are worth taking. That is, their requests for twins must represent their free and informed choices. But there are reasons to be skeptical of this interpretation, including that the preferences of many patients seem to be very strongly shaped, if not sometimes completely constrained, by concerns about costs—costs that mainly result from the routine exclusion of in vitro fertilization from health insurance coverage. It is quite possible, we believe, that these cost concerns actually undermine the autonomy of fertility patients, pushing many of them to take risks with their health and the health of their hoped‐for future children. (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)

As imaging technologies help us understand the structure and function of the brain, providing insight into human capabilities as basic as vision and as complex as memory, and human conditions as impairing as depression and as fraught as psychopathy, some have asked whether they can also help us understand human agency. Specifically, could neuroimaging lead us to reassess the socially significant practice of assigning and taking responsibility?While responsibility itself is not a psychological process open to investigation through neuroimaging, decision‐making is. (...) Over the past decade, different researchers and scholars have sought to use neuroimaging (or the results of neuroimaging studies) to investigate what is going on in the brain when we make decisions. The results of this research raise the question whether neuroscience—especially now that it includes neuroimaging—can and should alter our understandings of responsibility and our related practice of holding people responsible. It is this question that we investigate here. (shrink)

In July 2000, the Seminole Nation of Oklahoma passed a resolution that would effectively expel a significant portion of its tribal members. The resolution amended the Nation's constitution by changing its membership criteria. Previously, potential members needed to show descent from an enrollee of the 1906 Dawes Rolls, the official American Indian tribal rolls established by the Dawes Commission to facilitate the allotment of reservation land. The amended constitution requires possession of one-eighth Seminole Indian blood, a requirement that a significant (...) portion of the tribe's membership cannot fulfill. The members of the Nation who fail to meet this new membership criterion all have one thing in common: they are black.Descendents of former slaves who came to live among the Seminole Indians of Florida in the seventeenth and eighteenth centuries, the black Seminoles have been officially recognized by the U.S. government as members of the Seminole Nation of Oklahoma since 1866. (shrink)

In July 2000, the Seminole Nation of Oklahoma passed a resolution that would effectively expel a significant portion of its tribal members. The resolution amended the Nation's constitution by changing its membership criteria. Previously, potential members needed to show descent from an enrollee of the 1906 Dawes Rolls, the official American Indian tribal rolls established by the Dawes Commission to facilitate the allotment of reservation land. The amended constitution requires possession of one-eighth Seminole Indian blood, a requirement that a significant (...) portion of the tribe's membership cannot fulfill. The members of the Nation who fail to meet this new membership criterion all have one thing in common: they are black.Descendents of former slaves who came to live among the Seminole Indians of Florida in the seventeenth and eighteenth centuries, the black Seminoles have been officially recognized by the U.S. government as members of the Seminole Nation of Oklahoma since 1866. (shrink)

This volume assesses the ethical, quantitative, and qualitative questions posed by the current financing of biomedical research.

When Nadya Suleman gave birth to eight babies in January 2009, the story ignited a media frenzy—first because the babies were only the second set of octuplets born in the United States, and later because of the irregularities of their conception by in vitro fertilization and the personal details of their mother's life. Hidden beneath the sensational aspects of the story, though, are a number of fundamental ethical, medical, and legal issues concerning assisted reproductive technologies. Three essays examine these questions.

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 1980, the number of twin births in the United States has increased 76 percent, and the number of triplets or higher‐order multiples has increased over 400 percent. These increases are due in part to increased maternal age, which is associated with spontaneous twinning. But the primary reason for these increases is that more and more people are undergoing fertility treatment. Despite an emerging (but not absolute) consensus in the medical literature that multiples, including twins, should be a far less (...) frequent outcome of fertility treatment, American clinicians currently practice fertility medicine in ways likely to result in twins and, occasionally, triplets—often, they tell us, at the request of their patients. At first blush, one might conclude that these practice patterns show that patients and their doctors have weighed the risks associated with twins against the benefits of swiftly completing their families and decided that the risks are worth taking. That is, their requests for twins must represent their free and informed choices. But there are reasons to be skeptical of this interpretation, including that the preferences of many patients seem to be very strongly shaped, if not sometimes completely constrained, by concerns about costs—costs that mainly result from the routine exclusion of in vitro fertilization from health insurance coverage. It is quite possible, we believe, that these cost concerns actually undermine the autonomy of fertility patients, pushing many of them to take risks with their health and the health of their hoped‐for future children. (shrink)

In 2013, the U.S. National Institutes of Health funded four large interdisciplinary research projects exploring the “implications, challenges and opportunities associated with the possible use of g...

The theoretical value of talking to the media isn’t hard to appreciate. Who doesn’t want to shape the public conversation, whether to make it more nuanced and reasoned or to bring injustice and wrongdoing to light? Issues you’ve studied are in the news and you get to be the expert, pointing out what’s wrong, or right, or offering another way of thinking about a difficult question. If you’re lucky, you get your name in print—and in a publication your friends and (...) family actually read. But it can also be intimidating. I used to feel like the hapless witness about to be cross-examined by the wily attorney. I’d heard about the twenty-four-hour news cycle and the push to appeal to the lowest common denominator. .. (shrink)

In late 2019, He Jiankui, the Chinese scientist who created the world's first gene‐edited babies, and two embryologists were sentenced to prison and fined. Thirteen months earlier, when the world first learned about the experiment, He and his colleagues drew swift and nearly uniform international condemnation for prematurely moving to human trials, for the risks they took with the children's health, and for He's secrecy. The organizing committee for the second genome editing summit said the experiment failed to conform with (...) international norms.” In the United States, the legal picture is complex. No doubt the specific experiment He performed would have run afoul of long‐standing research regulations due to its problems with informed consent and ethical review. But other laws also affect this kind of work, in particular, a budget rider that for the past four years has been included in federal appropriations legislation. (shrink)

The theoretical value of talking to the media isn’t hard to appreciate. Who doesn’t want to shape the public conversation, whether to make it more nuanced and reasoned or to bring injustice and wrongdoing to light? Issues you’ve studied are in the news and you get to be the expert, pointing out what’s wrong, or right, or offering another way of thinking about a difficult question. If you’re lucky, you get your name in print—and in a publication your friends and (...) family actually read. But it can also be intimidating. I used to feel like the hapless witness about to be cross-examined by the wily attorney. I’d heard about the twenty-four-hour news cycle and the push to appeal to the lowest common denominator.... (shrink)

Respect for autonomy is a central value in reproductive ethics, but it can be a challenge to fulfill and is sometimes an outright puzzle to understand. If a woman requests the transfer of two, three, or four embryos during fertility treatment, is that request truly autonomous, and do clinicians disrespect her if they question that decision or refuse to carry it out? Add a commitment to justice to the mix, and the challenge can become more complex still. Is it unfair (...) for insurance policies to exclude from coverage the costs of giving fertility to those who lack it or restoring fertility in those who have lost it? What does “just reproduction” look like in the face of multifarious understandings of both justice and autonomy and in light of increasingly complex and costly reproductive technologies? In today's dialogue about reproduction, medicine, and ethics in the United States, old ethical issues—such as whether women ought to be allowed to access pregnancy termination—are more contested than they have been in decades, while new technologies—like those used to edit the genes of human embryos—suggest that our species could face unprecedented questions about who should exist. As we considered the discussions accompanying these issues and contemplated a special report responding to them, we found ourselves consistently circling back to two ethical commitments: respect for autonomy and the pursuit of justice. As one of the nine essays in this collection asks, why should certain women receive help to establish a pregnancy while others are thrown in jail when they miscarry or their child is stillborn? Respect for autonomy is required where individuals have the ability to make fully informed and voluntary choices. Yet does respecting autonomy require acceding to all the choices of patients or consumers of medical care? We consider these and related questions in this special report from the Hastings Center Report. (shrink)

Because an influenza pandemic would create the most serious hardships for those who already face most serious hardships, countries should take special measures to mitigate the effect of a pandemic on existing social inequalities. Unfortunately, there is little evidence that anybody is thinking about that.

It is simple enough to claim that academic research institutions ought to be trustworthy. Building the culture and taking the steps necessary to earn and preserve institutional trust are, however, complex processes. The experience motivating this special report—a request for the Center for Talented Youth at Johns Hopkins University to collaborate on research regarding the genetics of intelligence—illustrates how ensuring institutional trustworthiness can be in tension with a commitment to fostering research. In this essay, we explore the historical context for (...) biomedical research institutions like Johns Hopkins that have worked to build local community trust. In so doing, we consider how the example under focus in this special report can lead to greater consideration of how research institutions balance fostering trust with their other commitments. (shrink)

The theoretical value of talking to the media isn’t hard to appreciate. Who doesn’t want to shape the public conversation, whether to make it more nuanced and reasoned or to bring injustice and wrongdoing to light? Issues you’ve studied are in the news and you get to be the expert, pointing out what’s wrong, or right, or offering another way of thinking about a difficult question. If you’re lucky, you get your name in print—and in a publication your friends and (...) family actually read. But it can also be intimidating. I used to feel like the hapless witness about to be cross-examined by the wily attorney. I’d heard about the twenty-four-hour news cycle and the push to appeal to the lowest common denominator... (shrink)

This November I spent three days in Washington, D.C., splitting my time between The March of Dimes Prematurity Prevention Conference and a National Institutes of Health meeting about the use of genome sequencing technology in newborns. The trip was a powerful reminder for me of a problem I've confronted before.

A reply by the author of “Normalizing Atypical Genitalia: How a Heated Debate Went Astray,” to “The Battle Lines of Sexual Politics and Medical Morality,” by John D. Lantos, and “More Rhetoric Than Argument?” by Ellen K. Feder, Alice Dreger, and Anne Tamar‐Mattis.

In a series of essays and letters published in 2010, commentators in bioethics debated the ethics of two interventions that aim to prevent or treat a symptom of a genetic condition called congenital adrenal hyperplasia, which can cause “virilization” in affected baby girls—the development of atypical, sometimes masculine‐appearing, genitals. Surgeries are often performed to try to “normalize” both the appearance and the function of affected girls’ genitals, and a drug thought to prevent virilization is sometimes prescribed to pregnant women who (...) are likeliest to be carrying an affected fetus. The CAH debates suggest that there is profound disagreement in the field about whether preventing or treating virilization is an appropriate goal of medicine—or, indeed, parenting. Of course, that disagreement has its roots in ongoing debates about how to understand and react to a range of anatomical and behavioral differences, from short stature to deafness to hyperactivity, as well as ongoing debates about the limits of autonomy—in this case, parental autonomy, which is all the more complex. These issues are at the heart of bioethics. Yet it can be very difficult for us to talk and write respectfully and clearly about them. Here, I recount the debates, show how they lost focus, and attempt to explain why the question about how parents and physicians should respond to atypical genitalia in children is so important and difficult. I argue that it is not a question that should be answered based on a single principle or philosophical commitment. No one principle can do all of the work. For each individual or family that faces it, the question is shaped by details about particular interventions aimed at altering a particular difference and offered in a particular social and family context. Scholars in bioethics who hold an especially strong commitment to any one principle should advocate for their views, but they must also make room for and respect the kind of pragmatic, particularized decision‐making that parents sometimes engage in. (shrink)

ABSTRACT This summary lays out the basic science and methodology used in genetic testing that investigates historical population migrations and the ancestry of living individuals. The genetic markers used in this testing, and the distinction between Y‐chromosome, mitochrondial and autosomes analysis, are explained and the shortcomings of these methodologies are explored.

A response to Anne Haehl's commentary, “Fertility Treatment: Medically Necessary?”.

The theoretical value of talking to the media isn’t hard to appreciate. Who doesn’t want to shape the public conversation, whether to make it more nuanced and reasoned or to bring injustice and wrongdoing to light? Issues you’ve studied are in the news and you get to be the expert, pointing out what’s wrong, or right, or offering another way of thinking about a difficult question. If you’re lucky, you get your name in print—and in a publication your friends and (...) family actually read. But it can also be intimidating. I used to feel like the hapless witness about to be cross-examined by the wily attorney. I’d heard about the twenty-four-hour news cycle and the push to appeal to the lowest common denominator... (shrink)

The attempts of scholars and scientists to unravel the mystery of the ancestral origins of the Lemba are summarised, focusing on Tudor Parfitt's book, Journey to the Vanished City, and a study by an international group of genetic and social scientists. The impact of this research on identity questions is raised.

ABSTRACTThe attempts of scholars and scientists to unravel the mystery of the ancestral origins of the Lemba are summarised, focusing on Tudor Parfitt's book, Journey to the Vanished City, and a study by an international group of genetic and social scientists. The impact of this research on identity questions is raised.

A response to Anne Haehl's commentary, “Fertility Treatment: Medically Necessary?”.

چرا به دنبال بورس فروش ویلچر در تهران هستیم -/- یکی از دلایل می تواند امید به قیمت پایین تر ویلچر در محل یا سایتی باشد که با عنوان بورس فروش ویلچر خود را معرفی کرده اند. بخاطر اینکه عزیزان تصور دارند که چنین محل هایی ارزان فروش هستند که با کمال احترام به تفکر آنان تجربه ما نشان داده است که قضیه برعکس این موضوع است و دلیل آن وجود دلالان در چنین محل هایی است. آنجایی که دست دلال (...) فعالیت کند انتظار قیمت مناسب ویلچر داشتن خیال باطلی است. (shrink)