The rapidly changing field of genetics affects society through advances in health-care and through implications of genetic research. This study addresses the impacts of new genetic discoveries and technologies on different segments of today's society. The book begins with a chapter on genetic complexity, and subsequent chapters discuss moral and ethical questions arising from today's genetics from the perspectives of health care professionals, the media, the general public, special interest groups and commercial interests.

In this new post-genomic age of medicine and biomedical technology, there will be novel approaches to understanding disease, and to finding drugs and cures for diseases. Hundreds of new “disease genes” thought to be the causative agents of various genetic maladies will be identified and added to the list of hundreds of such genes already identified. Based on this knowledge, many new genetic tests will be developed and used in genetic screening programs. Genetic screening is (...) the foundation upon which reproductive technologies such as pre-natal diagnosis (PND) and preimplantation genetic diagnosis (PGD) are based. Genetic information arising from the human genome may also be used in attempts to redesign the human genetic inheritance by engineering the human germline (germline engineering). In each of these technologies—PND, PGD, and germline engineering—there are serious ethical and social concerns. Moreover, all three are eugenic in nature because they strive to control which genes are passed down to future generations. The goals of this article are threefold: 1) to introduce the science behind the three technologies; 2) to give a brief overview of eugenics in the past century and show how these genetic technologies are eugenic; and 3) to present a vision of social justice that rejects the genetic determinism upon which eugenics is based and embraces a holistic, ecological view of nature and humanity. (shrink)

For elite athletes seeking a winning advantage, manipulation of their own genetic code has become a realistic possibility. In Genetic Technology and Sport, experts from sports science, genetics, philosophy, ethics, and international sports administration describe the potential applications of the new technology and debate the questions surrounding its use.

For the average person, genetic testing has two very different faces. The rise of genetic testing is often promoted as the democratization of genetics by enabling individuals to gain insights into their unique makeup. At the same time, many have raised concerns that genetic testing and sequencing reveal intensely personal and private information. As these technologies become increasingly available as consumer products, the ethical, legal, and regulatory challenges presented by genomics are ever looming. Assembling multidisciplinary experts, this (...) volume evaluates the different models used to deliver consumer genetics and considers a number of key questions: How should we mediate privacy and other ethical concerns around genetic databases? Does aggregating data from genetic testing turn people into products by commercializing their data? How might this data reduce or exacerbate existing healthcare disparities? Contributing authors also provide guidance on protecting consumer privacy and safety while promoting innovation. (shrink)

-/- Policy regulations of ethically controversial genetic technologies should, on the one hand, be based on ethical principles. On the other hand, they should be socially acceptable to ensure implementation. In addition, they should align with ethical theory. Yet to date we lack a reliable and valid scale to measure the relevant ethical judgements in laypeople. We target this lacuna. -/- We developed a scale based on ethical principles to elicit lay judgments: the Genetic Technologies Questionnaire (GTQ). In (...) two pilot studies and a pre-registered main study, we validated the scale in a representative sample of the US population. -/- The final version of the scale contains 20 items but remains highly reliable even when reduced to five. It also predicts behaviour; for example, ethical judgments as measured by the GTQ predicted hypothetical donations and grocery shopping. In addition, the GTQ may be of interest to policymakers and ethicists because it reveals coherent and ethically justified judgments in laypeople. For instance, the GTQ indicates that ethical judgments are sensitive to possible benefits and harms (in line with utilitarian ethics), but also to ethical principles such as the value of consent-autonomy. -/- In conclusion, the GTQ can be recommended for research in both experimental psychology and applied ethics, as well as a tool for ethically and empirically informed policymaking. (shrink)

To clarify concerns that the public has with genetic technologies, the article presents the results of focus group interviews conducted in Denmark in 2000. The concerns of the public are divided into three ideal-typical categories: social, economic, and cultural. Following a general discussion of why it is important to take these discourses of concern seriously, each discursive category is discussed with examples taken from the focus group interviews.

The use of genetic technologies within the equine industries has become increasingly common since the horse genome was published in 2009 (Wade et al. 2009). Testing for genes coding for disease in...

Bioethicists, like many other academics, have a tendency to try to make things general and simpler by eliminating context. Particulars, such as race, economic class, and gender, often seem to be lost in this ocean of generality and abstraction. But in losing them, we are neglecting the analysis of serious moral problems and, with it, the possibility of offering some kind of solution to such problems. This article argues that particulars do matter very much. We will focus ourattention here on (...) gender. We will argue that ignoring questions of gender when evaluating genetic technologies is seriously problematic because it might lead to further injustices against women. Proceeding with a noncontextual understanding of genetic technologies will likely disregard the unjust ways in which the health care system treats women, as well as the ways in which genetic technologies impose extra burdens on them. (shrink)

The “Model for Reaching Ethical Judgments in the context of Modern Technologies — the Case of Genetic Technology”, which is presented here, has arisen from the project “Ethical Criteria bearing upon Decisions taken in the field of Biotechnology”. This project has been pursued since 1991 in the Zentrum für interdisziplinäre Technikforschung (ZIT) of the Technical University of Darmstadt, with the purpose of examining decision-making in selected activities involving the production of transgenic plants that have a useful application. The (...) model is the basis of an outline for interviews to investigate how far decisions concerning the development of such plants with genetic techniques take ethical criteria into account. It was necessary to design this new model because other models for reaching judgments of this kind were not conceptually suited for concrete application. This model represents a problem related approach and combines methodological with substantive typology. In this it differs from comparable models for reaching ethical judgments. (shrink)

A number of authors have objected to potential parents' use of reproductive genetic technologies on the grounds that the use of these technologies reflects a morally problematic attitude toward parenting. More specifically, proponents of this view have argued that such a choice is inconsistent with the unconditional acceptance that lies at the heart of praiseworthy parental attitudes. This paper offers a rebuttal of this view by arguing that it is possible for a parent to exhibit unconditional acceptance of the (...) child herself without accepting each of that child's traits. If this is true, the use of reproductive genetic technologies does not inherently undermine appropriate parental attitudes. Further, by working to change some of a child's specific traits, a parent may instead exemplify an aspirational aspect of praiseworthy parenting and so demonstrate appropriate parental attitudes. (shrink)

New genetic technologies can not only be used to ‘cure’ many significant healthcare conditions, but at least potentially they can be used in ways that either change the user’s identity significantly and/or cause a different person to come into existence. It might be argued that these technologies present a challenge for Luck Egalitarians – the essence of this challenge being the claim that, given a commitment towards luck neutralisation, a Luck Egalitarian ought to be committed to equalisation of talent (...) using this technology, which appears repugnant. In the present contribution I will argue that this challenge is not as powerful as it appears, and that Luck Egalitarianism has sufficient resources to resist a commitment to equalisation of talent of a repugnant kind. Furthermore it provides us a useful framework to consider the introduction of technologies of this nature. (shrink)

The author argues that genetic technologies can never be fully sepa­rated from their eugenic ends. Because of this, the Church’s sexual ethic must be integrated with its social teaching to respond faithfully to ethical issues that arise with the use of genetic technologies. The author discusses, first, the Catholic opposition to eugenics from the turn of the twentieth century to the official papal condemnation of eugenics in 1930; next, the Church’s reaction to advances in DNA research in the (...) 1950s and 60s; and finally, the shift from optimism to caution from the 1970s on, as new genetic technologies emerged in embryonic stem cell research, genetic counseling, and gene therapy. The author explores both the sources on which the Church has drawn in responding to genetic advances and the social issues that should prove fruitful for con­templation in the future. (shrink)

Bonnie Rochman's first book, The Gene Machine: How Genetic Technologies Are Changing the Way We Have Kids—and the Kids We Have, is an impressive work of science journalism that provides a compelling introduction to some of the most important ethical questions raised by genetic technologies. Written for a general audience, The Gene Machine is a model for how to approach contentious ethical questions with equanimity, compassion, and, most importantly, accurate information. Rochman elucidates the facts, gives voice to the (...) most relevant interested parties, including families and experts, and lets readers draw their own conclusions. There are multiple points of entry for interested ethicists who might want to push... (shrink)

Reproductive genetic technologies allow parents to decide whether their future children will have or lack certain genetic predispositions. A popular model that has been proposed for regulating access to RGTs is the ‘genetic supermarket’. In the genetic supermarket, parents are free to make decisions about which genes to select for their children with little state interference. One possible consequence of the genetic supermarket is that collective action problems will arise: if rational individuals use the (...) class='Hi'>genetic supermarket in isolation from one another, this may have a negative effect on society as a whole, including future generations. In this article we argue that RGTs targeting height, innate immunity, and certain cognitive traits could lead to collective action problems. We then discuss whether this risk could in principle justify state intervention in the genetic supermarket. We argue that there is a plausible prima facie case for the view that such state intervention would be justified and respond to a number of arguments that might be adduced against that view. (shrink)

Richard J. Arneson From Choice to Chance: Genes and the Just Society1 intelligently addresses difficult issues at the intersection of medical ethics and the theory of justice. The authors, Dan Brock, Allen Buchanan, Norman Daniels, and Daniel Wikler, repeatedly emphasize their opinion that advances in genetic technology force upon us entirely new ethical questions which previous moral theories lack the resources to resolve.2 The claims that new scientific discoveries render previous moral theories obsolete should be regarded with suspicion. (...) The reader’s suspicion should be further aroused when she notes another feature of the authors’ theorizing that neatly fits the claim that we stand at the dawn of a new world of ethical theorizing. The authors’ discussion from start to finish stays at a middle level. By this I mean that the authors in each chapter begin with a few moral principles taken to be plausible or possibly plausible and examine their implications for issues raised by new genetic technology.3 This is not an exercise in applied ethics, because the principles initially invoked are subjected to criticism and scrutiny. But in almost every significant case the results are inconclusive. The moral puzzles that are raised are left unsolved, with moral reasons pointing toward opposed conclusions and the.. (shrink)

Beginning with the assumptions that genetic technology will make possible the enhancement of some significant human capacities and that our society will have self-evident reasons to pursue such enhancements, this essay suggests less evident reasons to proceed with extreme caution. The essay asks: Will we, in our attempts to enhance humans by reducing their subjection to chance and change, inadvertently impoverish them? It explores how technologies aimed at enhancement might affect the good that is our experience of some (...) forms of the beautiful and the excellent, the good that is relationships of care, and the good that is diversity across the life span. In the end, it speculates about the fundamental philosophical difference that underlies the disagreement between those who would tend to embrace a project to enhance human capacities and those who would tend to criticize such a project. (shrink)

This CQ department is dedicated to bringing noted bioethicsts together in order to debate some of the most perplexing contemporary bioethics issues. You are encouraged to contact department editor, D. Micah Hester, UAMS/Humanities, 4301 W. Markham St. #646, Little Rock, AR 72205, with any suggestions for debate topics and interlocutors you would like to see published herein.

As a species, we are on the cusp of being able to alter that which makes us uniquely human, our genome. Two new genetic technologies, embryo selection and germline engineering, are either in use today or may be developed in the future. Embryo selection acts to alter the human gene pool, reducing genetic diversity, while germline engineering will have the ability to alter directly the genomes of engineered individuals. Our genome has come to be what it is through (...) an evolutionary process extending over millions of years, a process that has involved exceedingly complex and unpredictable interactions between ourselves or our ancestors and myriad other life forms within Earth's biosphere. In this paper, the ecological imperative, which states that we must not alter the human genome or the collective human genetic inheritance, will be introduced. It will be argued based on ecological principles that embryo selection and germline engineering are unethical and unwise because they will diminish our survivability as a species, will disrupt our relationship with the natural world, and will destroy the very basis of that which makes us human. (shrink)

This paper focuses on one objection to the use of reproductive genetic technologies (RGTs): the argument known as the expressivist objection. According to this argument, the choice to use reproductive genetic technologies to prevent the birth of individuals with disabilities is an expression of disvalue for existing people with disability. Many have been persuaded by this impassioned perspective. This paper shows that this argument is misguided and so does not constitute a sound objection to the use of RGTs (...) to prevent disability in future children. It first identifies some responses to the objection that may be sound but not completely convincing to proponents of the expressivist position. It then describes a thought experiment designed to demonstrate more clearly that choosing to use RGTs to prevent disability in future children does not convey a negative message about people who have disabilities. After describing a decision that clearly does not send such a message, the paper walks through a series of cases and shows how, despite differences that might seem to be morally relevant, each is morally equivalent to the previous one with respect to the extent that it expresses disvalue for such individuals. (shrink)

As rapid advances in human genetic research are transferred into new areas of genetic technology, questions relatingto the use of these techniques will escalate. This paper examines some of the policy concerns surrounding recent developments in genetic screening. It discusses the impetus and implications of genetic screening in general, examines various applications, and analyzes the costs and benefits of screening programs currently in existence. Special emphasis is placed on whether or not screening should be considered (...) a matter of public health and mandated on those grounds. This paper argues against any compulsory screening programs except where the disease is easily identified, applicable across social groups, and treatable. While screening services for carriers of genetic disease and prenatal diagnosis should be made available and education programs should be expanded substantially, the burden of proof for involuntary programs is placed on the proponents. There is little public health justification at thb time for mandatory screening though this does not preclude future public health demands. It is argued that the goals and justification of various human genetic technologies must be examined at this time due to the rapid advancement of the research as well as the ultimate benefits promised for humankind. CiteULike Connotea Del.icio.us What's this? (shrink)

This study examines recent French bioethics laws governing the uses of new reproductive and genetic technologies (NRGTs)—including in-vitro fertilization, surrogate motherhood, prenatal diagnostics, sex selection, and cloning—in light of feminist claims to women's rights, especially a woman's right to reproductive freedom. To this end, the study explores two interrelated questions: First, to what extent have French feminists supported NRGT development and treatment? Second, to what extent do French national bioethics debates, laws, and policies reflect feminist reactions to NRGTs? The (...) investigation of these questions is informed by recent theories of state feminism that show how national policy debates are gendered by particular sets of feminist ideas, and how policy choices resulting from these debates turn some of these ideas into law (McBride Stetson and Mazur 1995). Some of the most pressing feminist concerns in this area include women's loss of control over their bodies and fertility, women's exploitation and commercialization of their bodies, and women's health risks from NRGTs. The analysis of pronouncements by French feminist writers, researchers, and policy-makers reveals a multiplicity of feminist stances on NRGTs, showing keenly how feminists contest what constitutes effective feminist public policies to illuminate the fact that these policies are subject to shifting political contestations, rather than the reflection of a fixed set of feminist ideas. While contemporary French feminists grapple with the potential merits and dangers of NRGTS, the study shows that feminists generally seem to support NRGTs, as long as French law protects women's reproductive autonomy. Seen in this light, France's strong sense of the right to procreate through facilitation of access to NRGTs is not a contradiction of France's strong social and legal support for women's reproductive freedom, but rather enables French lawmakers to regulate NRGTs more effectively. (shrink)

This study examines recent French bioethics laws governing the uses of new reproductive and genetic technologies —including in-vitro fertilization, surrogate motherhood, prenatal diagnostics, sex selection, and cloning—in light of feminist claims to women’s rights, especially a woman’s right to reproductive freedom. To this end, the study explores two interrelated questions: First, to what extent have French feminists supported NRGT development and treatment? Second, to what extent do French national bioethics debates, laws, and policies reflect feminist reactions to NRGTs? The (...) investigation of these questions is informed by recent theories of state feminism that show how national policy debates are gendered by particular sets of feminist ideas, and how policy choices resulting from these debates turn some of these ideas into law. Some of the most pressing feminist concerns in this area include women’s loss of control over their bodies and fertility, women’s exploitation and commercialization of their bodies, and women’s health risks from NRGTs. The analysis of pronouncements by French feminist writers, researchers, and policy-makers reveals a multiplicity of feminist stances on NRGTs, showing keenly how feminists contest what constitutes effective feminist public policies to illuminate the fact that these policies are subject to shifting political contestations, rather than the reflection of a fixed set of feminist ideas. While contemporary French feminists grapple with the potential merits and dangers of NRGTS, the study shows that feminists generally seem to support NRGTs, as long as French law protects women’s reproductive autonomy. Seen in this light, France’s strong sense of the right to procreate through facilitation of access to NRGTs is not a contradiction of France’s strong social and legal support for women’s reproductive freedom, but rather enables French lawmakers to regulate NRGTs more effectively. (shrink)

Advances in genetic technology will enable us to intervene in human biological development to prevent and cure diseases, to restore individuals' functions and capacities back to a normal level after injury and even to enhance them beyond what has hitherto been considered as normal functioning for our species. Such a power to reshape and modify the human condition raises fundamental questions that touch upon the central core of morality. One of these questions is distributive justice. Will all people (...) have equal access to the beneficial effects of genetic technology in general and medical genetics in particular? Most of the new therapeutic and enhancement techniques will probably be quite expensive. That means that, probably during a long period of time after the new genetic technology enters medical practice, its use will be practically monopolized by the rich, to the detriment of all those who are not in a position to afford genetic treatments. In this paper, I argue that the health care inequality that inevitably will follow from the adoption of genetic technology, while posing a challenge to provide as long as possible for genetic interventions for all, is hardly a reason to reject the new technology. In that case, we would have to reject any new medicine or medical technique that cannot be made available to all people at once. Finally, I also argue that the ?enhanced new world? that would follow the introduction of genetic technology, even with the kind of inequality that might then arise, poses no serious threat either to elite sports or to society and should therefore be welcome. (shrink)

The revolutionary potential of the CRISPR-Cas9 gene editing technique has created a resurgence in enthusiasm and concern in genetic research perhaps not seen since the mapping of the human genome at the turn of the century. Some such concerns and anxieties revolve around crossing lines between somatic and germline interventions as well as treatment and enhancement applications. Underpinning these concerns, there are familiar concepts of safety, unintended consequences and damage to genetic identity and the creation of designer children (...) through pursuing human enhancement and eugenics. In the policy realm, these morally laden distinctions and anxieties are emerging as the basis for making important and applied measures to respond to the fast-evolving scientific developments. This paper argues that the dominant normative framing for such responses is insufficient for this task. This paper illustrates this insufficiency as arising from a continued reliance on misleading genetic essentialist assumptions that generate groundless speculation and over-reactionary normative responses. This phenomenon is explicit with regard to prospective human genetic enhancements. While many normative theorists and state-of-the-art reports continue to gesture toward the influence of environmental and social influences on a person and their traits and capacities, this recognition does not extend to the substance of the arguments themselves which tend to revert to the debunked genetic determinist framework. Given the above, this paper argues that there is a pressing need for a more central role for sociological input into particular aspects of this “enhancement myth” in order to give added weight, detail and substance to these environmental influences and influence from social structures. (shrink)

Research protocols must have a reasonable balance of risks and anticipated benefits to be ethically and legally acceptable. This article explores three characteristics of research on reproductive genetic technologies that complicate the assessment of the risk-benefit ratio for such research. First, a number of different people may be affected by a research protocol, raising the question of who should be considered to be the subject of reproductive genetic research. Second, such research could involve a wide range of possible (...) harms and benefits, making the evaluation and comparison of those harms and benefits a challenging task. Finally, the risk-benefit ratio for this type of research is difficult to estimate because such research can have unpredictable, long-term implications. The article aims to facilitate the assessment of risk-benefit ratios in research on reproductive genetic technologies by proposing and defending some guidelines for dealing with each of these complicating factors. (shrink)

The article reconsiders the nature and location of science in the development of genetic classification. Drawing on field studies of medical genetics, we explore how patient categorization is accomplished in between the clinic and laboratory. We focus on dysmorphology, a specialism concerned with complex syndromes that impair physical development. We show that dys-morphology is about more than fitting patients into prefixed diagnostic categories and that diagnostic process is marked by moments of uncertainty, ambiguity, and deferral. We describe how different (...) forms of evidence are brought into play and how patterns of physical features are identified as genetic or not. We suggest that clinical categorical work helps articulate the genetic as an emergent domain of medical classification and that moments of ambiguity and deferral create an imperative space that helps legitimate the need for more technoscience, and consequently, more clinical judgment with which to fix the genetic future. (shrink)

Are sociologists always critical about genetics? Are philosophers always more supportive? This is the impression of many sociologists in the United Kingdom who argue that contemporary British philosophers criticise genetic technologies and applications in ways that scientists and medical doctors can deal with. They emphasise matters like informed consent, but pay less or no attention to the wider social consequences of technologies, practices and policies. Philosophers in their turn may see sociologists as irrationally hostile to science and medical practice. (...) Some of them refuse to criticise genetics, arguing that there is nothing to criticise. Others feel that their criticisms are in fact more accurate than the concerns raised by sociologists. And yet others point out that the impression of uncritical support can only be true of a certain specific group. Philosophers have so many internal disagreements among themselves that the generalisation can hardly be justified. In this paper an attempt is made by a sociologist and a philosopher to understand how sociological and philosophical perspectives on bioethics may differ in discussions about genetics. The paper, which proceeds in dialogue form, is based on our email correspondence on the advantages and disadvantages of genetic technologies and their applications, and on the idea of social consequences as understood by scholars from two different disciplines. (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)

Working with current methodologies of art, biology, and genetic technologies, the stated aims of artists working in this area include attempts both to critique the implications and outcomes of genetic technologies and to forge a new art practice involved in creating living beings using those technologies. It is this last ambition, the development of a new art practice involved in creating living beings, that this essay will particularly take to task by questioning the ethics of that goal and (...) the uses of biotechnology in reaching it. (shrink)