Ethics and Enhancing Humans
Selected resources from The Hastings Center.
Bioethics Briefings:
What counts as enhancement is not clear because what counts as normal is itself ambiguous. Enhancement technologies have the potential to affect the children we have, the way we think, the way we compete on the athletic field, the way we fight in war, and the way we parent. Human enhancement presents policymakers with new challenges regarding human rights, access, and regulation. Read our briefing to consider: What are the ethics of enhancing humans?
From Hastings Bioethics Forum:
- Catastrophe Ethics and Charitable Giving
- How to Avoid a Genetic Arms Race
- In the Shadow of War: Health Conditions in the Za’atari Refugee Camp
- Emerging from the Cacophony of Clinical Ethics Consultation
- Financing Reforms to Meet a Pivotal Moment in Global Health
From Hastings Center Report:
Reproductive Embryo Editing: Attending to Justice
First published: 22 August 2022
Abstract
The use of embryonic genome editing tools is often touted as a way to ensure the birth of healthy and genetically related children. Many would agree that this is a worthy goal. Yet the purpose of this article is to argue that, if we are concerned with justice, accepting such a goal as morally appropriate commits one to rejecting the use of social resources for further development of embryo editing for reproductive purposes. This is so because there are safer and more effective means that can allow many more prospective parents to achieve the same valued goal and that can offer additional benefits.
Handle with Care: The WHO Report on Human Genome Editing
First published: 27 April 2022
Abstract
The World Health Organization’s recent Report on Human Genome Editing departs from similar reports from other institutions in that it recognizes that ethical assessments of the technology are deeply complex, surprisingly fragile, and subject to practical and political considerations. The WHO report largely recommends that human genome editing, rather than being accepted in some circumstances and banned in others, should be handled with care. The report recommends some oversight mechanisms—such as intellectual property licensing—previously undiscussed or underexplored in sister reports, and it recognizes that others—like international law—may be impractical. This essay explores how the report has shifted global considerations of governing human genome editing to more pragmatic ends.
The Market in Noninvasive Prenatal Tests and the Message to Consumers: Exploring Responsibility
First published: 31 January 2022
Abstract
The potential for bias in industry-developed information about noninvasive prenatal testing (NIPT), in addition to the lack of regulatory oversight for this type of product, raises questions about clinical communication and adoption. We identify NIPTs marketed globally and analyze their English-language consumer-oriented brochures to determine whether they meet existing policy and ethical guidance from the Nuffield Council on Bioethics on NIPT marketing, how they establish the legitimacy of the test given the lack of regulatory oversight for NIPT, and whether content differs between the brochures from for-profit and nonprofit entities. In many of these brochures, NIPTs are misrepresented as diagnostic tests, claims lack supporting evidence, regulatory bodies that do not evaluate the test itself are referenced, and clinicians are invoked as authorities on specific NIPTs. Our findings substantiate concerns about the extent to which commercial imperatives operating in the absence of market-access regulation could exacerbate problems of misrepresentation and inaccuracy in marketing materials.
Justice, Bioethics, and Covid-19
First published: 14 December 2021
Abstract
Both articles in the November-December 2021 issue of the Hastings Center Report reflect bioethics’ growing interest in questions of justice, or more generally, questions of how collective interests constrain individual interests. Hugh Desmond argues that human enhancement should be reconsidered in light of developments in the field of human evolution. Contemporary understandings in this area lead, he argues, to a new way of thinking about the ethics of enhancement—an approach that replaces personal autonomy with group benefit as the primary criterion for deciding what enhancements are acceptable. In the second article, Johannes Kniess considers the many attempts within bioethics to draw on John Rawls’s work to discuss health care access and social determinants of health, and he comes across as moderately optimistic that Rawls’s theory of justice has ongoing relevance.
In Service to Others: A New Evolutionary Perspective on Human Enhancement
First published: 14 December 2021
Abstract
In enhancement ethics, evolutionary theory has been largely perceived as supporting liberal views on enhancement, in which decisions to enhance are predominantly regulated by the principle of individual autonomy. In this article, I critique this perception in light of recent scientific developments. Cultural evolutionary theory suggests a picture in which individual interests are entangled with community interests, and this undermines the applicability of the principle of autonomy. This is particularly relevant for enhancement ethics given how—I argue—decisions to enhance are often influenced by desires to increase social status. The service view on enhancement, based on principles of service and trust, offers, I propose, better guidance for the challenges of social living.
Gene Editing: How Can You Ask “Whether” If You Don’t Know “How”?
First published: 24 May 2021
Abstract
Though questions about whether gene editing should be done at all have dominated ethical discussion, a literature about how it can be done ethically has been growing. Work on responsible translational pathways for human germline gene editing has been criticized for focusing on the wrong questions. But questions about responsible translational pathways—questions about how gene editing could be done ethically—are, in an important sense, prior to questions about whether it is desirable and permissible. Asking “whether” questions about gene editing requires a model of what responsible clinical use of gene editing would look like.
Legal and Ethical Issues in the Report Heritable Human Genome Editing
First published: 23 April 2021
Abstract
This essay discusses the new report, Heritable Human Genome Editing, by the National Academy of Medicine, the National Academy of Sciences, and the Royal Society. After summarizing the report, we argue that the report takes four quite bold steps away from prior reports, namely (1) rejecting an omnibus approach to heritable human genome editing (HHGE) in favor of a case-by-case analysis of possible uses of HHGE, accepting that HHGE is acceptable in some cases; (2) recognizing that the interest in having children who are genetically related to both would-be rearing parents is one that the regulation of HHGE should honor; (3) patterning a regulatory model for HHGE on the United Kingdom’s approach to regulating mitochondrial replacement techniques; and (4) conveying skepticism that international regulation is possible while showing a strong preference for a default into national regulatory regimes for HHGE.
Can Genetic Nondiscrimination Laws Save Lives?
First published: 14 December 2020
Abstract
Numerous state laws and the federal Genetic Information Nondiscrimination Act (GINA) have been enacted to prevent or redress genetic discrimination in employment and health insurance, but laws protecting against genetic discrimination in life insurance have been less common and weak. Consequently, some individuals with a genetic risk of a serious illness have declined presymptomatic genetic testing, thereby decreasing their prevention and treatment options and increasing their mortality risk. In 2020, Florida became the first state to prohibit life insurance companies from using the results of presymptomatic genetic tests in underwriting. Although the law was “only” intended to prevent genetic discrimination, a possible or even likely consequence of the law will be to encourage timely genetic testing by at-rick individuals and thereby save lives.
On What We Have Learned and Still Need to Learn about the Psychosocial Impacts of Genetic Testing
First published: 03 July 2019
Abstract
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.
The Psychological Well-being of Pregnant Women Undergoing Prenatal Testing and Screening: A Narrative Literature Review
First published: 03 July 2019
Abstract
Prenatal screening and testing are preference-based health care options. They are offered so that pregnant women and their partners can learn genetic information about the developing fetus. In this literature review, I summarize studies of women’s and their partners’ psychological responses to prenatal testing and screening. These studies investigate the experiences of pregnant women, largely in the United States, who have access to health care services. Although the results indicate that these women are receptive to prenatal testing and screening and seem to have limited negative psychological consequences, pregnant women without access to these services are not represented and may have different experiences. With that caveat in mind, based on the evidence, women generally do well psychologically as they manage the options that arise for them in the prenatal context.
Qualitative Research on Expanded Prenatal and Newborn Screening: Robust but Marginalized
First published: 03 July 2019
Abstract
If I told you that screening technologies are iteratively transforming how people experience pregnancy and early parenting, you might take notice. If I mentioned that a new class of newborn patients was being created and that particular forms of parental vigilance were emerging, you might want to know more. If I described how the particular stories told about screening in public, combined with parents’ fierce commitment to safeguarding their children’s health, make it difficult for problematic experiences with screening to translate into negative opinions about it, you would most likely be intrigued. An extensive qualitative literature documents all these social phenomena, and more, in connection with the spread of prenatal and newborn screening. So why is it, then, that commentators frequently assert that the predicted psychosocial impact of increased screening and testing associated with “the genomic revolution” has been far less severe and worthy of attention than predicted? How can or should social science “evidence” that sits outside adopted measurement conventions be considered? Why is it that summary statements about the psychosocial impact of genomic information often ignore qualitative evidence, or sideline it as relevant only for improving communication among patients, clinicians, and public health systems? This essay addresses such questions, using qualitative research on prenatal and newborn screening as a case study for illustrating the broad methodological, ideological, and dialogical issues at stake.
Evidence and Human Genome Editing
First published: 11 October 2018
Abstract
In July, the United Kingdom’s Nuffield Council on Bioethics issued a report on human genome editing in which it said that editing a human embryo’s genome to reduce the possibility that the future child will inherit a genetic disorder could be ethically acceptable when certain conditions are met: the intended use of genome-editing interventions secures and is consistent with the “welfare of the future person” and does not “increase disadvantage, discrimination or division in society.” Yet the Council noted that if current legal restrictions on the use of heritable genome-editing interventions were lifted, the interventions should be used only in the context of “well-designed and supervised studies” to ensure that they are safe and effective. Some people might contend that it is premature to talk about what kind of evidence—and how much—will be needed to gauge the safety and effectiveness of genome-editing interventions since the United Kingdom, the United States, and several other countries currently prohibit clinical trials that involve transferring into a woman an embryo whose genome was edited. Yet based on an analysis of evidentiary disputes involving several medical technologies (an analysis that I conducted with my Hastings colleague Michael Gusmano for a forthcoming book, Debating Modern Medical Technologies: The Politics of Safety, Effectiveness, and Patient Access), I suggest that now is the time to start the conversation about evidentiary standards for the use of genome editing in reproductive medicine.
Genome “Surgery”?
First published: 28 March 2018
Abstract
When Kai Kupferschmidt writes about CRISPR-based gene editing in German, he faces an obstacle: there’s no exact translation for “editing” that has the same connotations as it has in English. Instead, as he explained last fall at The Hastings Center’s preconference symposium on new genetic technologies at the World Conference of Science Journalists, he draws on a variety of phrases, including “genome surgery,” which conveys precision in Kupferschmidt’s assessment, and “gene scissors,” which communicates CRISPR’s mechanistic nature. But in any language, explaining CRISPR is difficult. It’s a challenge I face at The Hastings Center, where I write about biotechnology for a public audience.
Parenting in the Age of Preimplantation Gene Editing
First published: 24 November 2017
Abstract
Medical science at its core aims to preserve health and eliminate disease, but a common theme in scientific discovery is the application of findings in ways that were not the primary intent. The development of diagnostic modalities to predict the health of resulting children has been a fundamental aim underpinning research into prenatal and preimplantation diagnostic modalities; however, the knowledge gained has in some cases been utilized for nonmedical purposes. As an example, amniocentesis developed to determine whether the pregnancy is chromosomally normal also provides information about the sex of the fetus, which normally does not affect health. The emerging gene-editing technologies that could be used to repair mutated disease-causing genes in an embryo will presumably also be able to be used to alter traits unrelated to disease. And yet, I will argue, the desire to preserve the mystery of reproduction remains a central value in humans’ quest to reproduce. This yearning to maintain the mysteries will likely temper the development of strategies to alter our genome and affect the genetic identities of our offspring. In my experience as an obstetrician and reproductive endocrinology and infertility subspecialist, people want to have, not the best possible baby, but rather their own baby.
CRISPR Becomes Clearer
First published: 20 September 2017
Abstract
In this pivotal year for gene editing, the breakthrough molecular system CRISPR–Cas9 has advanced on three fronts. In under seven months, an influential scientific body—the National Academies of Sciences, Engineering, and Medicine the National Academies of Sciences, Engineering, and Medicine—cracked open the door to human germline gene editing, ownership of patents covering CRISPR–Cas9 came into much sharper focus as a result of a dispute between two parties, and experiments showing proof of concept of the most controversial of uses—altering germlines of humans—were revealed as having been successfully performed by a mainstream laboratory. Given the vast spoils that await the patent owners, final results of all patent disputes over CRISPR–Cas9 patents may stretch on for years. Meanwhile, bioethical considerations of CRISPR–Cas9 have also been contentious as the United States and other countries grapple with how best to regulate gene editing.
Crowdsourcing the Moral Limits of Human Gene Editing?
First published: 24 May 2017
Abstract
In 2015, a flourish of “alarums and excursions” by the scientific community propelled CRISPR/Cas9 and other new gene-editing techniques into public attention. At issue were two kinds of potential gene-editing experiments in humans: those making inheritable germ-line modifications and those designed to enhance human traits beyond what is necessary for health and healing. The scientific consensus seemed to be that while research to develop safe and effective human gene editing should continue, society’s moral uncertainties about these two kinds of experiments needed to be better resolved before clinical trials of either type should be attempted.
In the United States, the National Academies of Science, Engineering and Medicine (NASEM) convened the Committee on Human Gene Editing: Scientific, Medical and Ethical Considerations to pursue that resolution. The committee’s 2017 consensus report has been widely interpreted as “opening the door” to inheritable human genetic modification and holding a line against enhancement interventions. But on a close reading it does neither. There are two reasons for this eccentric conclusion, both of which depend upon the strength of the committee’s commitment to engaging diverse public voices in the gene-editing policy-making process.
Toward an Ethically Sensitive Implementation of Noninvasive Prenatal Screening in the Global Context
First published: 16 March 2017
Abstract
Noninvasive prenatal screening using cell-free DNA, which analyzes placental DNA circulating in maternal blood to provide information about fetal chromosomal disorders early in pregnancy and without risk to the fetus, has been hailed as a potential “paradigm shift” in prenatal genetic screening. Commercial provision of cell-free DNA screening has contributed to a rapid expansion of the tests included in the screening panels. The tests can include screening for sex chromosome anomalies, rare subchromosomal microdeletions and aneuploidies, and most recently, the entire fetal genome.
The benefits of this screening tool are generally framed, by both providers and commercial laboratories, as enhancing reproductive autonomy and choice by providing an earlier, simpler, and more accurate screening while potentially reducing the need for invasive follow-up testing. The majority of the literature has explored these issues empirically or conceptually from a European or North American vantage point, one that assumes normative priorities such as individual reproductive autonomy and the clinical availability of maternal health care or prenatal screening programs within which cell-free DNA screening is offered. While its implementation has raised both challenges and opportunities, very little is known about real-world experiences and the implications of the rapid introduction of cell-free DNA screening outside of North America and Europe, especially in low- and middle-income countries. To begin addressing this gap in knowledge, we organized a four-day international workshop to explore the ethical, legal, social, economic, clinical, and practical implications of the global expansion of cell-free DNA screening. We describe eight key insights that arose from the workshop.
Limits of Responsibility: Genome Editing, Asilomar, and the Politics of Deliberation
First published: 28 September 2015
Abstract
On April 3, 2015, a group of prominent biologists and ethicists called for a worldwide moratorium on human genetic engineering in which the genetic modifications would be passed on to future generations. Describing themselves as “interested stakeholders,” the group held a retreat in Napa, California, in January to “initiate an informed discussion” of CRISPR/Cas9 genome engineering technology, which could enable high-precision insertion, deletion, and recoding of genes in human eggs, sperm, and embryos. The group declared that the advent of a technology that makes human germ-line genetic engineering plausible makes a corollary discussion of its ethical implications urgent. Echoing this sentiment, the National Academy of Sciences and the National Academy of Medicine have announced plans to convene an international summit in fall 2015 to assess the implications of CRISPR/Cas9.
Yet the notion that the advent of this particular technology is the warrant for initiating a public discussion is remarkable, and so too is the idea that the experts who have brought it into being and are putting it to use are best positioned to define the terms of the debate. The relevant ethical questions are by no means specific, let alone subsidiary, to the CRISPR/Cas9 technology. They are longstanding questions about what features of human life ought not be taken as objects of manipulation and control. They are questions about our responsibilities to our children and our children’s children, where the mark of our actions will be inscribed upon their bodies and their lives.
Don’t Mind the Gap: Intuitions, Emotions, and Reasons in the Enhancement Debate
First published: 19 May 2015
Abstract
Reliance on intuitive and emotive responses is widespread across many areas of bioethics. The current debate on biotechnological human enhancement is particularly interesting in this respect. A strand of “bioconservatives” that has explicitly drawn connections to the modern conservative tradition, dating back to Edmund Burke, appeals to the alleged wisdom of our intuitions and emotions to ground opposition to some biotechnologies or their uses. Such reliance on intuitions and emotions is widely acknowledged as one of the distinguishing features of this conservative strand by both its supporters and opponents.
So-called bioliberals, those who in principle do not oppose human bioenhancement, tend to rely on rational arguments and to see intuitions and emotions mostly as sources of biases. This approach often translates into shifting the burden of proof onto bioconservatives and challenging them to provide arguments against the proposed enhancement to back what bioliberals perceive as merely intuitive, emotive, and irrational reactions.
In this article, I am going to show that the methodological divide between bioliberals and bioconservatives is less significant than at first glance it appears to be and less significant than it is often taken to be. I will do so by defending two theses. The first is that reliance on intuitions and emotions is not a prerogative of bioconservatives: bioliberals have their typical intuitions and emotive responses and are for this reason exposed to potential biases in the same way as bioconservatives are. The second thesis is that reliance on intuitions and emotions is not necessarily antithetic to reason and rationality.
The Need for a Neuroscience ELSI Program
First published: 09 July 2014
Abstract
Last year, President Obama launched the Brain Research through Advancing Innovative Neurotechnologies Initiative with the goal of developing new technologies for studying the brain’s functioning, right down to the cellular level. The President subsequently asked the Presidential Commission for the Study of Bioethical Issues to develop “a core set of ethical standards” to guide neuroscience research and its applications. This May, the PCSBI issued “Gray Matters: Integrative Approaches for Neuroscience, Ethics, and Society,” the first of a two-volume response to this request.
Although “Gray Matters” mentions some of the ethical issues that together define the emerging field of neuroethics, the report as a whole may disappoint those seeking answers. It focuses almost entirely on the metaquestion of how ethics might be integrated into neuroscience research, offering four recommendations. Even as a preliminary proposal, however, the recommendations in “Gray Matters” do not go far enough.
Prenatal Whole Genome Sequencing
First published: 20 June 2012
Abstract
Whole genome sequencing is quickly becoming more affordable and accessible, with the prospect of personal genome sequencing for under $1,000 now widely said to be in sight. The ethical issues raised by the use of this technology in the research context have received some significant attention, but little has been written on its use in the clinical context, and most of this analysis has been futuristic forecasting. This is problematic, given the speed with which whole genome sequencing technology is likely to be incorporated into clinical care. This paper explores one particular subset of these issues: the implications of adopting this technology in the prenatal context without a good understanding of when and how it is useful.
Prenatal whole genome sequencing differs from current prenatal genetic testing practice in a number of ethically relevant ways. Most notably, whole genome sequencing would radically increase the volume and scope of available prenatal genetic data. The wealth of new data could enhance reproductive decision-making, promoting parents’ freedom to make well-informed reproductive decisions. We argue, however, that there is potential for prenatal whole genome sequencing to alter clinical practice in undesirable ways, especially in the short term. We are concerned that the technology could (1) change the norms and expectations of pregnancy in ways that complicate parental autonomy and informed decision-making, (2) exacerbate the deleterious role that genetic determinism plays in child rearing, and (3) undermine children’s future autonomy by removing the option of not knowing their genetic information without appropriate justification.
REPROGENETICS and the “Parents Have Always Done It” Argument
First published: January 2011
Abstract
A common argument in favor of using reprogenetic technologies to enhance children goes like this: parents have always aimed at enhancing their children through upbringing and education, so why not use new tools to accomplish the same goal? But reprogenetics differs significantly from good childrearing and education, in its means, if not its ends.
Rethinking “Liberal Eugenics”: Reflections and Questions on Habermas on Bioethics
First published: November 2005
Abstract
In the new “liberal eugenics,” children could be genetically improved as long as the enhancements let children choose from among a wide range of ways to live their lives. The German political philosopher Jürgen Habermas has opened a debate with the proponents of this view. Habermas suggests that a person could not really regard her life as her own if she lived with a body that somebody else had, without asking her opinion, “enhanced” for her.
Authenticity and Ambivalence: Toward Understanding the Enhancement Debate
First published: May 2005
Abstract
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.
Biogerontology, “Anti-aging Medicine,” and the Challenges of Human Enhancement
First published: July 2003
Abstract
Slowing the aging process would be one of the most dramatic and momentous ways of enhancing human beings. It is also one that mainstream science is on the brink of pursuing. The state of the science, together with its possible impact, make it an important example for how to think about research into all enhancement technologies.
Inheritable Genetic Modification and a Brave New World: Did Huxley Have It Wrong?
First published: March 2003
Abstract
What makes inheritable genetic modification attractive is not its ability to treat disease, but its capacity, someday, to enhance human traits beyond what mere good health requires. But, these discoveries will not be imposed on us by government, as Huxley thought. If they take over our lives, it will be because they were sold to us on the open market, as commodities we cannot do without.
Enhancing Cognition in the Intellectually Intact
First published: May 1997
Abstract
As science learns more about how the brain works, and fails to work, the possibility for developing “cognition enhancers” becomes more plausible. And the demand for drugs that can help us think faster, remember more, and focus more keenly has already been demonstrated by the market success of drugs like Ritalin, which tames the attention span, and Prozac, which ups the competitive edge. The new drug Aricept, which improves memory, most likely will join them. Whether such drugs are good for individuals, or for society, is an open question, one that demands far more public discussion.
Special Issues
The Ethics of Sequencing Newborns: Reflections and Recommendations
July/August 2018, Volume 48, Issue S2
Abstract
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.
The Genetics of Intelligence: Ethics and the Conduct of Trustworthy Research
September/October 2015, Volume 45, Issue S1
Abstract
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.
From Hastings Center Bioethics Timeline:
1982: Splicing Life
Splicing Life, a report on the social and ethical issues of the genetic engineering in humans, was issued by the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research in 1983, introducing the concept of “genetic engineering” into the biomedical and bioethical lexicon.
https://bioethics.georgetown.edu/documents/pcemr/splicinglife.pdf
1990: First Human Gene Therapy Clinical Trial
The first gene therapy trial included two girls with adenosine deaminase (ADA) deficiency, a genetic immunological disease, and was done at the National Institutes of Health Clinical Center by W. French Anderson, MD, Kenneth Culver, MD, and Michael Blaese, MD, through the National Heart, Lung, and Blood Institute and the National Cancer Institute. Virally delivered therapy would be reexamined after the death of University of Pennsylvania research subject Jesse Gelsinger in 1999, though research in genetically altering somatic cells as a promising treatment has accelerated since the discovery of CRISPR-Cas9 (clustered regularly interspaced short palindromic repeats) and other related interventions.
https://www.genengnews.com/magazine/269/making-history-with-the-1990-gene-therapy-trial/
1994: Publication of John Robertson’s Children of Choice: Freedom and the New Reproductive Technologies
Robertson sets forth a comprehensive theory of the evolving legal and ethical concept of procreative liberty, i.e., “the freedom to decide whether or not to reproduce and the freedom to reproduce when, with whom, and by what means one chooses.” He delineated the implications of procreative liberty, covering topics that include contraception, abortion, in vitro fertilization, surrogacy, genetic screening, conception for eventual organ donation, and creating embryos for research.
J. Robertson, Children of Choice: Freedom and the New Reproductive Technologies (Princeton, NJ: Princeton University Press, 1994). https://press.princeton.edu/books/paperback/9780691036656/children-of-choice
1998: Conclusions of Research “On the Prospect of Technologies Aimed at the Enhancement of Human Capacities and Traits”
This project has served as an important anchor for the subsequent discussion of a wide variety of technologies. The technologies have extended from cosmetic surgery to brain-computer interfaces.
E. Parens, ed., Enhancing Human Traits: Ethical and Social Implications(Washington, DC: Georgetown University Press, 1998).
E. Parens, “Is Better Always Good?” Hastings Center Report 28, no. 1 (1998). https://onlinelibrary.wiley.com/doi/full/10.2307/3527981
1999: Conclusions and Publication of Research: “On Prenatal Testing and Disability Rights”
This project gave prominent attention to the social model of disability in general and to the disability-community critique of prenatal genetic testing in particular. It has served as an important anchor for the subsequent discussions of disability justice and reproductive justice.
E. Parens and A. Asch, “The Disability Rights Critique of Prenatal Genetic Testing: Reflections and Recommendations,” Hastings CenterReport29, no. 4 (1999): S1-S22. https://www.thehastingscenter.org/publications-resources/special-reports-2/disability-rights-critique-of-prenatal-genetic-testing/
E. Parens and A. Asch. (Eds), Prenatal Testing and Disability Rights, Washington, DC: Georgetown University Press, 2000, https://www.amazon.com/Prenatal-Testing-Disability-Hastings-Studies/dp/0878408045
2000: Publication of Allen Buchanan, Daniel Brock, Norman Daniels, and Daniel Wikler’s From Chance to Choice: Genetics and Justice
This book addresses the ethical issues underlying the application of genetic technologies to human beings. Probing the implications of the remarkable advances in genetics, the authors ask how these should affect our understanding of distributive justice, equality of opportunity, the rights and obligations of parents, the meaning of disability, and the role of the concept of human nature in ethical theory and practice.
A. Buchanan et al., From Chance to Choice: Genetics and Justice(New York: Cambridge University Press, 2000).
2007: Publication of John Harris’s Enhancing Evolution: The Ethical Case for Making Better People
In his 2007 book, John Harris endorses genetic engineering, stem-cell research, designer babies, and cloning. He argues that biotechnology makes human enhancement possible and in so doing biotechnology is good morally, for individuals, social policy, and good for future generations that need serious improvement. Biotechnology could allow us to live longer, healthier, and happier lives by, for example, providing us with immunity from cancer and HIV/AIDS. Biotechnologically driven enhancement could influence evolution to yield improved reasoning, concentration, and memory, strength, stamina, and reaction speed. He argues that it may not only be permissible but morally obligatory.
J. Harris, Enhancing Evolution: The Ethical Case for Making Better People (Princeton: Princeton University Press, 2007). https://press.princeton.edu/books/paperback/9780691148168/enhancing-evolution.
2010: Publication of Alan Buchanan’s Beyond Humanity? The Ethics of Biomedical Enhancement
Alan Buchanan endorses efforts to enhance human life through biotechnology and refutes the arguments of those who consider enhancement a mistake.
A. Buchanan, Beyond Humanity? The Ethics of Biomedical Enhancement(Oxford: Oxford University Press, 2010). https://global.oup.com/academic/product/beyond-humanity-9780199587810?cc=us&lang=en&.
2016: Approval Allowing Embryos to Be Permanently Genetically Altered
The U.K.’s Human Fertilization and Embryology Authority authorizes the clinical use of two different techniques (maternal spindle transfer and pronuclear transfer) to prevent the transmission of mitochondrial DNA disorders, marking the first nationally-regulated approval process that allows embryos to be permanently genetically altered.
https://www.nuffieldbioethics.org/news/techniques-prevent-mitochondrial-dna-disorders-approved-uk
2018: The First Genome-Edited Babies Are Born
The first two genome-edited babies are born in China. Defying international agreements and laws in his home country, the Chinese biophysicist He Jiankui used a CRISPR gene-editing tool to modify the genes of two embryos in an apparent attempt to make them resistant to HIV infection. His work was roundly condemned both within and outside China, but it was soon followed by an announcement from Russia that a scientist there also planned to create genome-edited babies, raising questions about whether and how the international community might reign in rogue scientists.