Genetic Ethics

This study takes off from the ethical problem that racism grounded in population genetics raises. It is an analysis of four standard scientific responses to the problem of genetically motivated racism, seen in connection with the Human Genome Diversity Project (HGDP): (1) Discriminatory uses of scientific facts and arguments are in principle ‘misuses’ of scientific data that the researcher cannot be further responsible for. (2) In a strict scientific sense, genomic facts ‘disclaim racism’, which means that an epistemically correct grasp (...) of genomics should be ethically justified. (3) Ethical difficulties are issues to be ‘resolved’ by an ethics institution or committee, which will guarantee the ethical quality of the research scrutinized. (4) Although population genetics occasionally may lead to racism, its overall ‘value’ for humankind justifies its cause as a desirable pursuit. I argue that these typical responses to genetically motivated racism supervene on a principle called the ‘ethic of knowledge’, which implies that an epistemically correct account has intrinsic ethical value. This principle, and its logically related ideas concerning the ethic of science, effectively avoids a deeper ethical question of responsibility in science from being raised. (shrink)

The rapid development of CRISPR-based gene editing has been accompanied by a polarized governance debate about the status of CRISPR-edited crops as genetically modified organisms. This article argues that the polarization around the governance of gene editing partly reflects a failure of public engagement with the current state of research in genomics and postgenomics. CRISPR-based gene-editing technology has become embedded in a narrow narrative about the ease and precision of the technique that presents the gene as a stable object under (...) technological control. By tracing the considerably destabilized scientific understanding of the gene in genomics and postgenomics, this article highlights that this publicly mediated ontology strategically avoids positioning the “ease of CRISPR-based editing” in the wider context of the “complexity of the gene.” While this strategic narrowness of CRISPR narratives aims to create public support for gene-editing technologies, we argue that it stands in the way of socially desirable anticipatory governance and open public dialogue about societal promises and the unintended consequences of gene editing. In addressing the polarization surrounding CRISPR-based editing technology, the article emphasizes the need for engagement with the complex state of postgenomic science that avoids strategic simplifications of the scientific literature in promoting or opposing the commercial use of the gene-editing technology. (shrink)

Ethically sound analyses of embryo genetic editing require more than simple assessments of safety considerations. After all, we as humans care deeply not only about our health, but also care profoundly about the kinds of societies we construct, the injustices that our actions produce, the responsibilities that we have toward others and ourselves, our self-understanding, the characters that we develop, our family relationships, and the world that we leave to our children and grandchildren.

Aldehyde dehydrogenase 2 (ALDH2) deficiency constitutes one of the most common hereditary enzyme deficiencies, affecting 35% to 40% of East Asians and 8% of the world population. It causes the well-known Asian Alcohol Flush Syndrome, characterized by facial flushing, palpitation, tachycardia, nausea, and other unpleasant feelings when alcohol is consumed. It is also associated with a marked increase in the risk of a variety of serious disorders, including esophageal cancer and osteoporosis. Our recent studies with murine models have demonstrated that (...) a one-time administration of an adeno-associated virus (AAV) gene transfer vector expressing the human ALDH2 coding sequence (AAVrh.10hALDH2) will correct the deficiency state and prevent alcohol-induced abnormalities of the esophagus and bone. If successful in humans, such strategy would reduce the increased risk-associated disorders such as esophageal cancer and osteoporosis, but also prevent the Asian Alcohol Flush Syndrome. This treatment thus raises ethical concerns: although it would potentially prevent fatal disease, it could also allow affected individuals to drink alcohol without suffering the Asian Alcohol Flush Syndrome and, hence, potentially enable personal destructive behavior. Here we explore the ethical arguments against the development of a gene therapy for ALDH2 deficiency and we find them wanting. We contend that development of such treatments is ethically appropriate and should be part and parcel of the solutions offered against the condition. (shrink)

As technology advances, the demand for innovative instructional materials also increases. As a result, the Department of Education urges teachers to develop instructional materials. This study was conducted at Bulusan National High School, Bulusan, Sorsogon, Philippines SY 2018-2019 which was aimed to develop gamified instructional materials in genetics that would aid in teaching and learning process of grade 12 STEM students. The developed gamified materials were collectively called the GIM in Genetics which is comprised of two parts; namely, Student’s Portfolio (...) and Gamified Lesson Plans. The GIM was anchored on the Teacher’s Guide provided by DepEd. Further, it utilized different game elements, to wit: game mechanics, badges, power cards, scoring system, levels, and leaderboards to deliver innovative teaching strategy and quality education. This paper suggests the development of various innovative teaching strategies and instructional materials as well as its utilization across different fields and subject areas. (shrink)

Instructional material is an integral part of teaching and learning process. Validating instructional materials is imperative to ensure quality before widespread utilization. This study validated the developed Gamified Instructional Material (GIM) in genetics for grade 12 STEM students. It employed the descriptive-developmental research design involving 41 STEM students and 11 Biology education experts chosen through purposive sampling. Findings revealed that students and experts strongly agreed that the GIM satisfied the criteria for a sound and valid instructional material. Further, the significant (...) change in the pretest and posttest scores of students indicated an improvement of their knowledge in genetics. It is recommended that the GIM be used as supplementary instructional material in teaching genetics. (shrink)

Merleau-Ponty claims that the idea of objective knowledge is supported by "our reveries." My aim in this paper is to explore this argument with respect to the idea of health. As a case study, I focus on bioethical issues surrounding return of results of incidental variants with respect to the use of genetic and genomic screening technologies (GSTs) in newborn and pediatric contexts. Drawing on a range of Merleau-Ponty’s texts, I argue that this case suggests the modern idea of health (...) to turn largely on the desire for control over one’s fate. More specifically, this is a desire for control aimed at assuring that the meaning of one’s life will stay the same as indexed by one’s ability expectations. I term this a desire for existential homeostasis. I further contend that the desire for existential homeostasis is underwritten by multiple sorts of privilege and, insofar as it informs health as a reverie, it is a desire that is particularly apt to contribute to and maintain injustice in both theory and practice. (shrink)

This chapter analyzes the ‘hard sell’ of genetically engineered (GE) mosquitoes with gene drives as the solution to mosquito-borne diseases. A defining characteristic of the aggressive sell of the bio-technology is the ‘biologization’ of the significant prevalence of mosquito-borne diseases in certain socio-economically marginalized regions of the global South. Specifically, hard sell narratives either minimize or ignore the structural, systemic factors that are partially responsible for the public health problem that the GE mosquitoes are intended to bio-solve. The biologization of (...) a public health problem that disproportionately affects low-income, marginalized populations in certain global South regions has epistemic, epidemiological, and gendered ethico-political costs. The primary focus of this chapter is two scientific papers by researchers with ties to Target Malaria, a research organization developing GE mosquitoes with gene drives as the solution to malaria in the global South. In the interest of a contextualized analysis of the hard sell of GE mosquitoes with gene drives in those scientific papers, this chapter examines the normative commitments of Target Malaria’s key backer, the Bill and Melinda Gates Foundation, a powerful private organization that currently dominates the global health governance stage. (shrink)

Clustered Regularly Interspaced Short Palindromic Repeats (CRISPR) has been the buzzword for genome editing in the past few years, especially with the birth of Lulu and Nana, twin girls who were genetically edited using the CRISPR/Cas system. To discuss this, a group of scientists, theologians, and ethicists gathered at the 2019 Institute on Religion in the Age of Science (IRAS) conference to discuss the implications of CRISPR gene editing. It became quickly apparent through our discussions that this CRISPR revolution will (...) impact not only human medicine, but any application that involves DNA in every organism from bacteria to plants and animals. Moreover, there are multiple stakeholders in this technology—not only the scientific community, but also the business, legal, and religious communities, to name a few. As a scientist myself, I am providing a brief overview of the scientific hopes and concerns about this powerful technology. (shrink)

Technologies for human germ‐line modification may soon enable humanity to create new types of human beings. Decisions about use of this power entail an unprecedented combination of difficulties: the stakes are immense, the unknowns are daunting, and moral principles are called into question. Evolved morality is not a sure basis for these decisions, both because of its inherent imperfections and because genetic engineering could eventually change humans’ innate cognitive mechanisms. Nevertheless, consensus is needed on moral values relevant to germ‐line modification. (...) These values could be based on characteristics of human beings that would remain constant regardless of revised genomes. (shrink)

Regulatory policy for genomic testing may be subject to biases that favor reliance on existing regulatory frameworks even when those frameworks carry unintended legal consequences or may be poorly tailored to the challenges genomic testing presents. This article explores three examples drawn from genetic privacy regulation, oversight of clinical uses of genomic information, and regulation of genomic software. Overreliance on expedient regulatory approaches has a potential to undercut complete and durable solutions.

Health care is transitioning from genetics to genomics, in which single-gene testing for diagnosis is being replaced by multi-gene panels, genome-wide sequencing, and other multi-genic tests for disease diagnosis, prediction, prognosis, and treatment. This health care transition is spurring a new set of increased or novel liability risks for health care providers and test laboratories. This article describes this transition in both medical care and liability, and addresses 11 areas of potential increased or novel liability risk, offering recommendations to both (...) health care and legal actors to address and manage those liability risks. (shrink)

At one time, specialized health privacy laws represented the bulk of the rules regulating genetic privacy, Today, however, as both the field of genomics and the content of privacy law change rapidly, a new generation of general-purpose privacy laws may impose new restrictions on collection, storage, and disclosure of genetic data. This article surveys these laws and considers implications.

Dynamic Consent is both a model and a specific web-based tool that enables clear, granular communication and recording of participant consent choices over time. The DC model enables individuals to know and to decide how personal research information is being used and provides a way in which to exercise legal rights provided in privacy and data protection law. The DC tool is flexible and responsive, enabling legal and ethical requirements in research data sharing to be met and for online health (...) information to be maintained. DC has been used in rare diseases and genomics, to enable people to control and express their preferences regarding their own data. However, DC has never been explored in relationship to historical collections of bioscientific and genetic heritage or to contexts involving Aboriginal and Torres Strait Islander people.In response to the growing interest by First Peoples throughout Australia in genetic and genomic research, and the increasing number of invitations from researchers to participate in community health and wellbeing projects, this article examines the legal and ethical attributes and challenges of DC in these contexts. It also explores opportunities for including First Peoples' cultural perspectives, governance, and leadership as a method for defining DC on cultural terms that engage best practice research and data analysis as well as respect for meaningful and longitudinal individual and family participation. (shrink)

Researchers now commonly collect biospecimens for genomic analysis together with information from mobile devices and electronic health records. This rich combination of data creates new opportunities for understanding and addressing important health issues, but also intensifies challenges to privacy and confidentiality. Here, we elucidate the “web” of legal protections for precision medicine research by integrating findings from qualitative interviews with structured legal research and applying them to realistic research scenarios involving various privacy threats.

I discuss this collection of published and unpublished essays on religion and ethics by GEM Anscombe edited by Mary Geach and Luke Gormally. My main doubt concerns the criteria on which papers have been included in this volume. I argue that, while part of the material included typically belongs to a discussion between believers, some of these are good examples of applied ethics with no direct link with the Christian faith and addressed to a universal audience of reasonable partners of (...) conversation. (shrink)

Jeremy Williams has argued that if we are committed to a liberal pro-choice stance with regard to selective abortion for disability, we will be unable to justify the prohibition of sex selective abortion. Here, I apply his reasoning to selective abortion based on other traits pregnant women may decide are undesirable. These include susceptibility to disease, level of intelligence, physical appearance, sexual orientation, religious belief and criminality—in fact any traits attributable to some degree to a genetic component. Firstly, I review (...) Williams’ argument, which claims that if a woman is granted the right to abort based on fetal impairment, then by parity of reasoning she should also be granted the right to choose sex selective abortion. I show that these same considerations that entail the permissibility of sex selective abortion are also applicable to genetic selection abortion. I then examine the objections to sex selective abortion that Williams considers and rejects, and show that they also lack force against genetic selection abortion. Finally, I consider some additional objections that might be raised, and conclude that a liberal pro-choice stance on selective abortion for disability entails the permissibility of selective abortion for most genetic traits. (shrink)

From Dawn till Dusk embraces the conceptual challenges often associated with Bioethics by taking the reader on a journey that embodies the circle of life and what it means to be human. The beginning and the end of life have always been an impossible riddle to humans. Bioethics does not aspire to unveil utter truths regarding the purpose of our existence; on the contrary, its task is to settle controversial issues that arise within this finite, very fragile and vulnerable life, (...) yet a life we still have to live. This book discusses thorny ethical issues that transcend time and are related to the dawn and the dusk of life: abortion and infanticide, genetic engineering, human reproductive cloning, the fear of death, rational suicide, and the right to die. The book's highest aspiration, though, is to both provide the reader with an opportunity to see the world from different perspectives and to showcase the irresistible charms of bioethical debates. (shrink)

The ethics of using genetic engineering to enhance athletic performance has been a recurring topic in the sport philosophy and bioethics literature. In this article, we analyze the ethics of cloning horses for polo competition. In doing so, we critically examine the arguments most commonly advanced to justify this practice. In the process, we raise concerns about cloning horses for polo competition, centering on normative aspects pertaining to sport ethics usually neglected by defenders of cloning. In particular, we focus on (...) how this practice could have a detrimental impact on the central skills of polo, and how it unjustly creates an uneven playing field. We suggest that the polo community would benefit from critically considering the ethical quandaries posed by the practice of cloning horses for polo competition. (shrink)

Current research on the human genome holds enormous long-term promise for improvements in health care, but it poses an immediate ethical challenge in the area of health insurance, by raising the question of whether insurers should be allowed to take genetic information about customers into account in the setting of premiums. It is widely held that such discrimination is immoral and ought to be illegal, and the prevalence of this view is understandable, given the widespread belief, which I endorse, that (...) every individual in a society as affluent as ours has a basic right to affordable health care. But prohibiting genetic discrimination in health insurance is not an effective way to protect this right. On the contrary, I argue that because of the nature of insurance as a product sold in a competitive market, such a prohibition is misguided, and its worthy aims must, instead, be pursued through reforms in our country’s system of publicly provided health care. (shrink)

We suggest a fuller understanding of the obligation to respect patient autonomy can be gained by recognizing patients as historically and socially situated agents, whose values are developed, challenged, and changed, rather than merely applied, in their decision-making about their use of preimplantation genetic diagnosis or preimplantation genetic screening (PGD/PGS). We ground this discussion in empirical research on the patients experiences with PGD/PGS, and conclude by suggesting that promoting patients’ self-respect is a useful ethical standard for providers and practices to (...) recognize. (shrink)

Public attitudes concerning cognitive enhancements are significant for a number of reasons. They tell us about how socially acceptable these emerging technologies are considered to be, but they also provide a window into the ethical reasons that are likely to get traction in the ongoing debates about them. We thus see Conrad et al’s project of empirically investigating the effect of metaphors and context in shaping attitudes about cognitive enhancements as both interesting and important. We sketch what we suspect is (...) a central theme that runs through these public attitudes, but that Conrad el al’s paper elides. We were disappointed that they did not more directly explore the efficacy of frames and metaphors associated with the values of authenticity and self-expression. This seems like a missed opportunity. Based on the premise that individualistic values enjoy centrality in Western and especially North American culture (e.g. Taylor 1989), we hypothesize that metaphors and frames informed by those values will be especially effective in shaping public attitudes. That is, when various kinds of novel enhancement are described as allowing people to more fully express themselves, or as helping people overcome obstacles to being authentic and true to their inner sense of themselves, those enhancements will be considered justified, and their use more likely to be viewed as socially acceptable by the public. We support our contention by drawing on work by Elliott (2004, 2011, c.f. Kadlac 2018), and discuss how this study, and others modeled on it, might shed light on our hypothesis. (shrink)

Making data broadly accessible is essential to creating a medical information commons. Transparency about data-sharing practices can cultivate trust among prospective and existing MIC participants. We present an analysis of 34 initiatives sharing DNA-derived data based on public information. We describe data-sharing practices captured, including practices related to consent, privacy and security, data access, oversight, and participant engagement. Our results reveal that data-sharing initiatives have some distance to go in achieving transparency.

Conventional methods of genetic engineering and more recent genome editing techniques focus on identifying genetic target sequences for manipulation. This is a result of historical concept of the gene which was also the main assumption of the ENCODE project designed to identify all functional elements in the human genome sequence. However, the theoretical core concept changed dramatically. The old concept of genetic sequences which can be assembled and manipulated like molecular bricks has problems in explaining the natural genome-editing competences of (...) viruses and RNA consortia that are able to insert or delete, combine and recombine genetic sequences more precisely than random-like into cellular host organisms according to adaptational needs or even generate sequences de novo. Increasing knowledge about natural genome editing questions the traditional narrative of mutations (error replications) as essential for generating genetic diversity and genetic content arrangements in biological systems. This may have far-reaching consequences for our understanding of artificial genome editing. (shrink)

This article traces the rapid progression of policy pertaining to human genome germline modifications using genome editing. It provides an overview of how one fertility physician implemented and advertised experimental techniques as part of his fertility clinic services, examines US law and policy, and assesses the impact of rhetoric influencing global policy and interpretation of the law. This article provides an in-depth examination of the medical rationale driving the acceptance of genome editing human embryos in two contexts: to cure disease (...) and treat infertility. It describes complexities in genomics and outlines risks currently associated with genome editing, asserting the available evidence fails to demonstrate genome editing constitutes a curative therapy. (shrink)

Reprogenetic technologies, which combine the power of reproductive techniques with the tools of genetic science and technology, promise prospective parents a remarkable degree of control to pick and choose the likely characteristics of their offspring. Not only can they select embryos with or without particular genetically-related diseases and disabilities but also choose embryos with non-disease related traits such as sex. -/- Prominent authors such as Agar, Buchanan, DeGrazia, Green, Harris, Robertson, Savulescu, and Silver have flocked to the banner of reprogenetics. (...) For them, increased reproductive choice and reduced suffering through the elimination of genetic disease and disability are just the first step. They advocate use of these technologies to create beings who enjoy longer and healthier lives, possess greater intellectual capacities, and are capable of more refined emotional experiences. Indeed, Harris and Savulescu in particular take reprogenetic technologies to be so valuable to human beings that they have insisted that their use is not only morally permissible but morally required. -/- Rethinking Reprogenetics challenges this mainstream view with a contextualised, gender-attentive philosophical perspective. De Melo-Martín demonstrates that you do not have to be a Luddite, social conservative, or religious zealot to resist the siren song of reprogenetics. Pointing out the flawed nature of the arguments put forward by the technologies' proponents, Rethinking Reprogenetics reveals the problematic nature of the assumptions underpinning current evaluations of these technologies and offers a framework for a more critical and skeptical assessment. (shrink)

In this article I reject the claim that the responsibilities acquired by gamete providers can be transferred to their biological children's intending parents. I defend this position by first showing that arguments in defence of the transferability of responsibilities in gamete provision cases fail to distinguish between the transfer and delegation of responsibility. I then provide an argument against the transferability of responsibilities in gamete provision cases that differs from the ones offered by James Lindemann Nelson and Rivka Weinberg. Though (...) I conclude that gamete providers have inalienable responsibilities towards their biological offspring, I note that the precise ethical and policy implications this has for gamete provision remain somewhat unclear. (shrink)

Understanding of the human genome and its functional significance has increased exponentially since the completion of the Human Genome Project in 2003. The HGP fueled the discovery of more than 1,800 disease genes and paved the way for researchers to identify and test for genes suspected of causing inherited diseases. Currently, there are more than 1000 genetic tests for human diseases and conditions on the market. These tests can play an integral role in the delivery of health care by providing (...) information that could potentially form the basis for profound life decisions, such as whether to undergo a prophylactic mastectomy, whether to terminate a pregnancy, or whether to take a particular drug or medication dose. (shrink)

With the recent report of a live birth after use of Mitochondrial replacement therapy, sometimes called ‘Three-parent IVF’, the clinical application of the technique is fast becoming a reality. While the United Kingdom allows the procedure under regulatory scrutiny, it remains effectively outlawed in many other countries. We argue that such prohibitions may violate individuals’ procreative rights, grounded in individuals’ interest in genetic affinity. The interest in genetic affinity was recently endorsed by Singapore’s highest court, reflecting an emphasis on the (...) importance of biological ties found across the globe. We apply that reasoning to make the case for a right to ‘Three-parent IVF’. (shrink)

Biotechnology and the Human Good by C. Ben Mitchell, Edmund D. Pellegrino, Jean Bethke Elshstain, and Scott B. Rae is a thoughtful, carefully argued perspective on the ethics of new developments in biotechnology, such as human enhancement, human germ-line engineering, cloning, nanotechnology, and cybernetics.

This article argues that two forms of mitochondrial replacement therapy, maternal spindle transfer and pro-nuclear transfer, are not therapies at all because they do not treat children who are coming into existence. Rather, these technologies merely create healthy children where none was inevitable. Even if creating healthy lives has some value, it is not to be confused with the medical value of a cure or therapy. The article addresses a recent Bioethics article, ‘Mitochondrial Replacement: Ethics and Identity,’ by Wrigley, Wilkinson, (...) and Appleby, who argue that PNT is morally favorable to MST due to the Non-Identity Problem. Wrigley et al. claim that PNT, since it occurs post-conception, preserves the identity of the resulting child, whereas MST, since it occurs pre-conception, is an identity-altering technique. As such, a child born with mitochondrial disease could complain that her parents failed to use PNT, but not MST. The present article argues that the authors are mistaken: both MST and PNT are identity-affecting techniques. But this is of little matter, for we should be cautious in drawing any moral conclusions from the application of the Non-Identity Problem to cases. The article then argues that the authors are mistaken in inferring that PNT is a type of embryonic cure or therapy for children with mitochondrial disease. The article cautions against the mistaken life-saving rhetoric that is common in bioethics discussions of MRTs. (shrink)