One of the most important and contentious policy issues surrounding genetics is whether genetic information should be treated separately from other medical information. The view that genetics raises distinct issues is what Thomas Murray labeled “genetic exceptionalism,” borrowing from the earlier term “HIV exceptional-ism.” The issue of whether the use of genetic information should be addressed separately from other health information is not merely an academic concern, however. Since the Human Genome Project began in 1990, nearly (...) every state has enacted legislation prohibiting genetic discrimination in health insurance; two-thirds of the states have enacted laws prohibiting genetic discrimination in employment, and other state laws have been enacted dealing with genetic discrimination in life insurance, genetic privacy, and genetic testing. Bills in Congress also would prohibit genetic discrimination in health insurance and employment. (shrink)

I would like to begin by thanking all of the commentators for their insightful analyses of ‘Genetic information, insurance and a pluralistic approach to justice’; I learnt a great deal from them all. Naturally, I cannot do justice to all of their criticisms in this brief response; instead, I shall use their remarks to prompt some clarificatory points about my arguments in the hope that this will help readers to draw their own conclusions about the various points of disagreement. (...) My aim in the paper was modest; I aimed to argue that considerations of justice do not speak unequivocally against the use of Genetic Test Results (GTRs) in insurance, and that a pluralist approach may lend support to some limited uses. This represents a compromise position between outright prohibition, and using GTRs in an insurance market in accordance with purely commercial principles. Notably, this conclusion is compatible with the thought that there may be other very strong moral reasons in favour of prohibition. These include concerns about privacy, as well as the consequentialist and human rights considerations that Tiller and Delatycki rightly highlight.1 Of course, considerations of justice are not orthogonal to questions regarding the right against genetic discrimination, since such a right might plausibly be supported by appeal to broadly egalitarian considerations. Indeed, one important challenge for the rights-based argument for prohibition is to defend the strong degree of genetic exceptionalism it connotes. As I briefly suggested in the paper, broadly egalitarian arguments might be invoked in an attempt to justify at least some degree of genetic exceptionalism here. Notably though, in her commentary, Feiring expresses scepticism about the view of genetic exceptionalism that is implicit in my acceptance of the idea that the use of GTRs in insurance warrants its own specific guidance.2 Given the different …. (shrink)

The term “exceptionalism” was introduced into health care in 1991 when Bayer described “HIV exceptionalism” as the policy of treating the human immunodeficiency virus different from other infectious diseases, particularly other sexually transmitted diseases. It was reflected in the following practices: pre- and post-HIV test counseling, the development of specific separate consent forms for HIV testing, and stringent requirements for confidentiality of HIV test results. The justification for these practices was the belief that testing was essential for prevention (...) and that patients might not seek HIV testing if confidentiality were not guaranteed. Confidentiality was believed to be particularly important given the degree of discrimination and stigmatization associated with the illness. Anonymous testing was a further step in ensuring strict confidentiality, even though such a practice prevented public officials from contacting partners and others who were at risk. (shrink)

Is genetic information different from other types of medical information and is therefore a special treatment required because of its special features? This question has been discussed since the mid-1990s under the label of genetic exceptionalism. This article discusses the essential arguments of the genetic exceptionalism discourse and analyzes their ethical reach. The primary question of this paper is whether the arguments of the current debate, with its predominantly scientific focus, are capable of solving the (...) ethical questions raised by genetic exceptionalism in such a way as to do justice to the normative scope and epistemological complexity. The author argues that the current genetic exceptionalism discourse is restrictive and offers little opportunity for exploring viable and ethically justifiable solutions regarding the implementation of genetic information in medical practice. Discourses on genetic exceptionalism should not only adhere to scientifically consistent criteria but also reflect individual perceptions and cultural values, enriched by adequate historical reflection. (shrink)

Can passing antidiscrimination laws ever be a bad idea? Yes, if broad policy reform is abandoned in favor of genetic‐specific legislation. But in spite of its serious flaws, both in concept and in practice, genetic‐specific legislation is sometimes worth passing anyway.

As genomic science has evolved, so have policy and practice debates about how to describe and evaluate the ways in which genomic information is treated for individuals, institutions, and society. The term genetic exceptionalism, describing the concept that genetic information is special or unique, and specifically different from other kinds of medical information, has been utilized widely, but often counterproductively in these debates. We offer genomic contextualism as a new term to frame the characteristics of genomic science (...) in the debates. Using stasis theory to draw out the important connection between definitional issues and resulting policies, we argue that the framework of genomic contextualism is better suited to evaluating genomics and its policy-relevant features to arrive at more productive discussion and resolve policy debates. (shrink)

The third of three commentaries on “A Defense of Genetic Discrimination,” from the July‐August 2013 issue.

In developing a framework for assessing privacy risks, Dupras and Bunnik’s “Toward a framework for assessing privacy risks in multi-omic research and databases” considers the question of whe...

The primary theme of this paper is the normative case against ownership of one's genetic information along with the source of that information (usually human tissues samples). The argument presented here against such “upstream” property rights is based primarily on utilitarian grounds. This issue has new salience thanks to the Human Genome Project and “bio-prospecting” initiatives based on the aggregation of genetic information, such as the one being managed by deCODE Genetics in Iceland. The rationale for ownership is (...) twofold: ownership will protect the basic human rights of privacy and autonomy and it will enable the data subjects to share in the tangible benefits of the genetic research. Proponents of this viewpoint often cite the principle of genetic exceptionalism, which asserts that genetic information needs a higher level of protection than other kinds of personal information such as financial data. We argue, however, that the recognition of such ownership rights would lead to inefficiency along with the disutility of genetic discoveries. Biomedical research will be hampered if property rights in genes and genetic material are too extensive. We contend that other mechanisms such as informed consent and strict confidentiality rules can accomplish the same result as a property right without the liabilities of an exclusive entitlement. (shrink)

The paper aims to present a critical analysis of the phenomenon and notion of exceptionalism in bioethics. The authors demonstrate that exceptionalism pertains to phenomena that are not (yet) entirely familiar to us and could potentially bear risks regarding their regulation. After an overview of the state of the art, we briefly describe the origins and evolution of the concept, compared to exception and exclusion. In the second step, they look at the overall development debates on genetic (...) exceptionalism, compared to other bioethical debates on exceptionalism, before presenting a detailed analysis of a specific case of early regulation of genetic screening. In the last part, the authors explain the historical background behind the connection between exceptionalism and exclusion in these debates. Their main conclusion is that while the initial stage of the discussion is shaped by the concept of exceptionalism and awareness of risks of exclusion, the later development centers around exceptions that are needed in detailed regulatory procedures. (shrink)

The discursive explosion that was provoked by the new genetics could support the impression that the ethical and social problems posed by the new genetics are somehow exceptional in their very nature. According to this view we are faced with special ethical and social problems that create a challenge so fundamental that the special label of genethics is needless to justify. The historical account regarding the evolution of the gene concepts could serve us to highlight the limits of what we (...) know about genes and what we can do with genes. The widespread notion about the exceptionality of genetic knowledge and its applicative possibilities is hardly justifiable and leads to misunderstandings regarding the conceptualization of the ethical and social problems we might face. Following a more realistic interpretation of the role of genes in human life we might avoid a whole set of fictive dilemmas and counterproductive regulatory efforts in bioethics. Bioethical discourse should move from the gene-centered scientific discourse toward the more sophisticated and complex discourses where human development represented as a matter of complex interactions between genomes and environments, between genes, educational factors, nutritional regimes, and other different developmental resources. If a gene is seen as one among the different developmental resources that are shaping a given human trait then both genethics and genetic exceptionalism could hardly be represented as a justified approach in discussing the ethical and social problems of genetics. (shrink)

In this article, we use the theory of Information Ethics to argue that deceased people have a prima facie moral right to privacy in the context of health data research, and that this should be reflected in regulation and guidelines. After death, people are no longer biological subjects but continue to exist as informational entities which can still be harmed/damaged. We find that while the instrumental value of recognising post-mortem privacy lies in the preservation of the social contract for health (...) research, its intrinsic value is grounded in respect for the dignity of the post-mortem informational entity. However, existing guidance on post-mortem data protection is available only in the context of genetic studies. In comparing the characteristics of genetic data and other health-related data, we identify two features of DNA often given as arguments for this genetic exceptionalism: relationality and embodiment. We use these concepts to show that at the appropriate Level of Abstraction, there is no morally relevant distinction between posthumous genetic and other health data. Thus, genetic data should not automatically receive special moral status after death. Instead we make a plea for ‘contextual exceptionalism’. Our analysis concludes by reflecting on a real-world case and providing suggestions for contextual factors that researchers and oversight bodies should take into account when designing and evaluating research projects with health data from deceased subjects. (shrink)

The prelims comprise: Introduction: Promise and Perils The History of Privacy as a Moral Concept Genetic Exceptionalism The Moral Basis of Medical Privacy Rights Genetic Paternalism Conclusion.

When used clinically, psychedelics may appear unusual or even unique when compared to more familiar or long-standing medical interventions, prompting some to suggest that the ethical issues raised may likewise be exceptional. If that is correct, then perhaps psychedelics should be treated differently from other medical substances: for example, by being subjected to different ethical or evidentiary standards. Alternatively, it may be that psychedelics have more in common with various existing medical interventions than first meets the eye. We argue in (...) favor of the latter position, drawing on parallels from earlier debates around genetic exceptionalism in bioethics. We suggest there are risks to adopting a stance of “psychedelic ethical exceptionalism,” and propose that consistent ethical rules and evidentiary standards should be applied across all relevant areas of clinical medicine. Importantly, this does not preclude the possibility that changes to existing standards should be made; but if so, this should not be justified by appealing to the alleged uniqueness of psychedelics. (shrink)

The Genetic Information Nondiscrimination Act of 2008 prohibits most forms of discrimination on the basis of genetic information in health insurance and employment. The findings cited as justification for the act, the almost universal political support for it, and much of the scholarly literature about genetic discrimination, all betray a confusion about what is really at issue. They imply that genetic discrimination is wrong mainly because of genetic exceptionalism: because some special feature of (...) class='Hi'>genetic information makes discrimination on the basis thereof wrong. I suggest, to the contrary, that the best arguments against genetic discrimination assume that health care is an entitlement . I do this by examining two different exceptionalist arguments for genetic nondiscrimination, showing that they do not furnish good reasons for prohibiting genetic discrimination unless one supposes that health care is an entitlement. (shrink)

In their article “Genomic Contextualism: Shifting the Rhetoric of Genetic Exceptionalism,” Garrison and colleagues (2019) make a compelling case for moving away from the rhetoric of genetic excepti...

According to US law, insurance companies can lawfully differentiate individual health insurance premiums on the basis of non-genetic medical information, but not on the basis of genetic information. The article reviews the case for such genetic exceptionalism. First, I critically assess some standard justifications. Next, I scrutinize an argument appealing to the view that genetically based premium differentiation expresses that persons do not all merit equal concern and respect. In the final section, I argue that even (...) if genetic exceptionalism is unjustified, there is a forceful luck egalitarian argument against basing premiums on genetic risks, to wit, that this tends to make some individuals worse off than others as a result of the bad brute luck involved in having a genetically determined, above-average risk of developing health problems. (shrink)

Germany is an interesting case with respect to the governance of reprogenetics. It has a strong profile in the technosciences and high aims regarding the global bioeconomy, yet her regulation of human genetics, reproductive medicine and embryo research has for a long time been rather restrictive. German biopolitical exceptionalism has often been explained by reference to Catholicism and the legacy of the Nazi past. The Germans, so goes the common story, have learnt the lessons of history and translated them (...) into unconditional respect for human dignity, which in turn translates into unconditional protection of human life, including the human embryo, and the firm repudiation of any eugenic distinction between ‘life worth to live’ and ‘life not worth to live’. This, however, is not the whole story. Alongside deontological strictness we find another strand of governing body politics and reprogenetics in Germany, the rule-and-exception model, running from the mid-1970s abortion law via the 2002 Stem Cell Act to the 2011 regulation of pre-implantation genetic diagnosis. In contrast to the former, that strongly draws on Kant and his concept of human dignity, the latter bears resemblances to Carl Schmitt's concept of state of exception. The article will show that the rule-and-exception model builds the exception into the rule and transforms the meaning and mandate of ethics, namely from safeguarding ethical standards to deciding about the exception. Given that the exception has now tended to become the rule, the question is whether the lessons of history will govern German reprogenetics for much longer. (shrink)

Is genetic information of special ethical significance? Does it require special regulation? There is considerable contemporary debate about this question (the genetic exceptionalism debate). Genetic information is an ambiguous term and, as an aid to avoiding conflation in the genetic exceptionalism debate, a detailed account is given of just how and why genetic information is ambiguous. Whilst ambiguity is a ubiquitous problem of communication, it is suggested that genetic information is ambiguous in (...) a particular way, one that gives rise to the problem of significance creep (i.e., where claims about the significance of certain kinds of genetic information in one context influence our thinking about the significance of other kinds of genetic information in other contexts). A contextual and contrastive methodology is proposed: evaluating the significance of genetic information requires us to be sensitive to the polysemy of genetic information across contexts and then examine the contrast in significance (if any) of genetic, as opposed to nongenetic, information within contexts. This, in turn, suggests that a proper solution to the regulatory question requires us to pay more attention to how and why information, and its acquisition, possession and use, come to be of ethical significance. (shrink)

Over the last decade, more U.S. taxpayers money has been spent trying to anticipate and address the bioethical issues raised by advances in human genetics than any other set of issues in the field. Does this make sense? Not everyone in bioethics thinks so. Some think there are more important topics, like issues of health care justice, that will be neglected if the field continues to follow the money to dwell on the moral challenges of a relatively small community of (...) research scientists. Others decry genetic exceptionalism as inappropriately singling out this scientific enterprise for criticism and regulation, when the same issues are faced even more acutely in other parts of the biomedical world. Human genetics is not accelerating as fast as pharmacology, for example, or as easy to abuse as virology, or as philosophically challenging as neurology. (shrink)

Dupras and Bunnik’s strong statement against the normative approach of genetic exceptionalism, which can no longer be justified in the midst of multi-omic research, is of great importance fo...

Much legislation dealing with the uses of genetic information could be criticised for exceptionalising genetic information over other types of information personal to the individual. This paper contends that genetic exceptionalism clouds the issues, and precludes any real debate about the appropriate uses of genetic information. An alternative to “genetically exceptionalist” legislation is to “legislate for fairness”. This paper explores the “legislating for fairness” approach, and concludes that it demonstrates a fundamental misunderstanding of both how (...) legislation is drafted, and how it is interpreted. The uncomfortable conclusion is this: policy-makers and legislators must tackle head-on the difficult policy questions concerning what should and should not be done with genetic information. Only by confronting this crucial issue will they achieve a workable legislative solution to the problems caused by genetic information. (shrink)

ABSTRACT This essay argues that historians of science who seek to embody our oxymoronic self-description must confront both contradictory terms that define our common enterprise—that is, both “history” and “science.” On the history/methods side, it suggests that we embrace the heterogeneity of our institutional arrangements and repudiate the homogeneous disciplinary model sometimes advocated by Thomas Kuhn and followed by art history. This implies that rather than treating the history of science as an end in itself, we consider it a means (...) to a variety of historical ends, think of ourselves as a tool-making community, and jettison moralistic assertions of scientific exceptionalism. To do so, this essay argues—on the science/subject side—that we rebrand the subject of our historical inquiry as “episcience,” a neologism that stands in relation to “science” as the new field of epigenetics does to the old genetics. Episcience encompasses both the material activities of the relevant sciences and their “surround” (environment, milieu, Umgebung) to reframe knowledge making to include the material processes that put science “in play” and make its findings matter beyond science. The essay concludes that “the history of science” is an oxymoron that makes sense to the extent that its practitioners acknowledge that the history of science is important not just because science is important, but because its history is. (shrink)

Progress in precision medicine is being achieved through the design of clinical trials that use genetic biomarkers to guide stratification of patients and assignation to treatment or control groups. Genetic analysis of biomarkers is, therefore, essential to complete their objectives, and this involves the study of biological samples from donor patients that have been recruited according to criteria previously established in the design of the clinical trial. Nevertheless, it is becoming very common that, in the solicitation of biological (...) samples, purposes that are beyond the objectives of the stated therapeutic trial research are introduced, like the development of ill-explained exploratory studies or the use in unspecified future research. In the digital era, the sequencing of patients’ DNA needs to be considered as a serious security matter, not only for the patients, but also for their relatives. Genetic information may be easily stored, even forever, in digital files. This engenders a permanent risk of being stolen or misused in many ways. Furthermore, re-identification of sample donors is technically feasible through their genetic data. For these reasons, genetic analysis of samples collected in clinical trials should be restricted to the accomplishment of their main objectives or well justified goals. (shrink)

How we integrate the astounding advances that genetics makes possible into our language, our conceptions of health and disease, and our systems to collect, control, and protect health-related information is a key question facing health law and policy-makers this decade.For example, the prospect that all of us may harbor the genetic seeds of our own demise forces us to confront the blurring of the lines between “health,” “predisposition,” and “disease.” How will we modify our conceptions of health and disease (...) in response to this new distinction?That these questions must be answered using, at least in part, new approaches seems unassailable. Yet, we run the risk of becoming mired in an old debate—exceptionalism—in which we haggle over the precise nature and scope of the similarities and differences between genetic information and all other health-related information. (shrink)

The steady growth of the number of DNA tests offered results in the discussion on the ethical aspects of these tests becoming increasingly lively and multifaceted. This text provides an overview of selected issues concerning the characteristics, protection and quality of the information acquired as a result of carrying out DNA tests. I discuss the salient points in the debates on the possibility to justify the so-called genetic exceptionalism, and the ways of specifying the scope of the principle (...) of confidentiality that protects the privacy of the information given by the subject. The final part of the article features the discussion on the importance of the possibility to use the information, acquired from these tests, in practice – for making decisions about the introduction of new kinds of tests for the clinical application. (shrink)

Drawing on comparisons to genetic exceptionalism, Cheung et al. (2025) reject psychedelic exceptionalism—that psychedelics raise unique concerns regarding increased vulnerability and diminished aut...

The production of genetic knowledge -- Scientific and economic strength of genetic reductionism -- Policy implications : discourses of genetic enlightenment as new disciplinary devices -- Genetic conceptualizations of normality and the idea of genetic justice -- Beyond genetic universality and authenticity, the lure of the genetic underclass -- Previews of the future as background -- Economic and actuarial perspective on genetics and insurance -- Practical and normative arguments against genetic exceptionalist legislation (...) -- The changing social role of private insurance : risk as a new representational regime. (shrink)

This essay examines issues involving personal privacy and informed consent that arise at the intersection of information and communication technology and population genomics research. I begin by briefly examining the ethical, legal, and social implications program requirements that were established to guide researchers working on the Human Genome Project. Next I consider a case illustration involving deCODE Genetics, a privately owned genetics company in Iceland, which raises some ethical concerns that are not clearly addressed in the current ELSI guidelines. The (...) deCODE case also illustrates some ways in which an ICT technique known as data mining has both aided and posed special challenges for researchers working in the field of population genomics. On the one hand, data-mining tools have greatly assisted researchers in mapping the human genome and in identifying certain “disease genes” common in specific populations. On the other hand, this technology has significantly threatened the privacy of research subjects participating in population genomics studies, who may, unwittingly, contribute to the construction of new groups that put those subjects at risk for discrimination and stigmatization. In the final section of this paper I examine some ways in which the use of data mining in the context of population genomics research poses a critical challenge for the principle of informed consent, which traditionally has played a central role in protecting the privacy interests of research subjects participating in epidemiological studies. (shrink)

Rationalities of Knowledge Production: On Transformations of Objects, Technologies and Information in Biomedicine and the Life Sciences. Since decades, scientific change has been interpreted in the light of of paradigm shifts and scientific revolutions. The Kuhnian interpretation of scientific change however is now more and more confronted with non‐disciplinary thinking in both, science and studies on science. This paper explores how research in biomedicine and the life sciences can be characterized by different rationalities, sometimes converging, sometimes contradictory, all present at (...) the same time with varying ways of influence, impact, and visibility. In general, the rationality of objects is generated by fitting new objects and findings into a new experimental context. The rationality of hypotheses is a move towards the construction of novel explanatory tools and models. This is often inseparable meshing with the third, the technological rationaliy, in which a technology‐driven, self‐supporting and sometimes self‐referential refinement of methods and technologies comes along with an extension into other fields. During the second and the third phase, the new and emerging fields tend to expand their explanatory reach not only across disciplinary boundaries but also into the social sphere, creating what has been characterized as “exceptionalism” (e.g. genetic exceptionalism or neuro‐exceptionalism). Finally, recent biomedicine and life‐sciences reach a level in which experimental work becomes more and more data‐driven because the technologically constructed experimental systems generate a plethora of findings (data) which at some point start to blur the original hypotheses. For the rationality of information the materiality of research practices becomes secondary and research objects are more and more getting out of sight. Finally, the credibility of science as a practice becomes more and more dependent on consensus about the applicability and relevance of its results. The rationality of interest (and accountability) has become more and more characteristic for a research process which is no longer primarily determined by the desire for knowledge but by the desire for relevance. This paper explores in which ways object‐driven and hypotheses‐driven experimental life‐sciences transformed into domains of experimental research evolving in a technologically constructed, data‐driven environment in which they are subjected to constant morphing due to the forces of different rationalities. (shrink)

Genetics: Medical, Theological and Ethical Aspects Tibbi, Dini ve Etik Boyutlariyla Genetik -/- Genetik bilimi biyolojinin botanik ve zooloji alanındaki uygulamalarını aşarak, sınırlarını önce antropolojiye sonra tıbba doğru hızla genişletmiştir. Öyle ki artık biyokimyadan onkolojiye kadar neredeyse tüm biyomedikal disiplinler, genetiğin kavramları, ilkeleri ve metodolojisi ile aşılanmıştır. Modern tıbbın uygulama alanında geniş bir yer tutan genetik bilimi, bir hastalığa dair risk analizi, teşhis ve tedavi seçeneklerinin belirlenmesi, prognozun değerlendirilmesi gibi klinik uygulamanın farklı evrelerinde söz sahibi olmaktadır. İçinde bulunduğumuz 21. yüzyılda (...) ise bu etkileşim eskisinden daha da güçlü hale gelerek devam etmektedir. Genetik biliminin klinikteki etkilerinin kapsamlı bir şekilde değerlendirildiği bu kitap, tüm dünyada tıbbın seyrini değiştirecek gelişmelere zemin teşkil eden genetik disiplininin olumlu ve olumsuz etkileri hakkında okuyucuya yetkili ağızlardan bilgiler taşımayı ve daha net bir fikir oluşturmayı hedeflemektedir. Kitapta dört ana bölüm bulunmaktadır. İlk bölümde doğum öncesi genetik uygulamalara, ikinci bölümde doğum sonrası (çocuk ve erişkinde) genetik testlere, üçüncü bölümde tıbbi genetiğin sıcak tartışma konusu olan Spinal Müsküler Atrofi’ye (SMA) ve dördüncü bölümde ise genetik bilgiyi felsefi bakışla ele alan makalelere yer verilmiştir. Genetiğin tıp pratiğini değiştirici ve dönüştürücü etkisine multidisipliner bir yaklaşımla ışık tutmayı amaçlayan bu eserin genetik hakkındaki Türkçe literatüre katkıda bulunmasını ümit ediyoruz. (shrink)

Significant advancements towards a future of big data genomic medicine, associated with large-scale public dataset repositories, intensify dilemmas of genomic privacy. To resolve dilemmas adequately, we need to understand the relative force of the competing considerations that make them up. Attitudes towards genomic privacy are complex and not well understood; understanding is further complicated by the vague claim of ‘genetic exceptionalism’. In this paper, we distinguish between consequentialist and non-consequentialist privacy interests: while the former are concerned with harms (...) secondary to exposure, the latter represent the interest in a private sphere for its own sake, as an essential component of human dignity. Empirical studies of attitudes towards genomic privacy have almost never targeted specifically this important dignitary component of the privacy interest. In this paper we first articulate the question of a non-consequentialist genomic privacy interest, and then present results of an empirical study that probed people’s attitudes towards that interest. This was done via comparison to other non-consequentialist privacy interests, which are more tangible and can be more easily assessed. Our results indicate that the non-consequentialist genomic privacy interest is rather weak. This insight can assist in adjudicating dilemmas involving genomic privacy. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Philosophy, Psychiatry, & Psychology 11.4 (2004) 299-301 [Access article in PDF] The Right Not to Know: A Challenge for Accurate Self-Assessment Ruth F. Chadwick Anderson and Lux present a very interesting and thought-provoking argument for the view that accurate self-assessment is a requirement for personal autonomy. What I want to suggest is that although this may be helpful in the context with which these authors are primarily concerned, namely (...) psychiatry and brain dysfunction, it is of less value to an account of autonomy more widely construed. I want to look at a possible counterexample, taken from another area of medicine, namely genetics.Toward the end of their article Anderson and Lux consider three objections to their position. I shall not discuss them all. My concern is with the third, that inaccurate self-assessment sometimes promotes autonomy, because knowing the truth about one's weaknesses is sometimes very debilitating. It is commonly argued that "you can if you think you can" and vice versa. As they point out, there are some complex issues involved here, in that if the result of the positive thinking is the ability to do the thing in question, then how can the self-assessment be deemed to have been inaccurate in the first place? They go on, however, to say that "it is unclear that inflated self-assessments yield benefits in contexts where what is required is not just effort but competence" (290).Now it has been argued, by some, in the context of genetics, that the proper understanding of autonomy may imply a "right not to know" facts about oneself. In other words, this is not just a matter of accurate or inaccurate assessment of the relevant facts about oneself; rather, what may be involved is a deliberate decision not to have access to facts that may be relevant to that assessment. There are clearly cases in which genetic information appears to be pertinent to an accurate self-assessment, as the following example suggests. Suppose there is information "available", through genetic testing, that would affect one's chances of having children, or of having children without a particular genetic disorder, and, knowing that such information is available, a couple decides not to avail themselves of this. This is clearly an inaccurate self-assessment, but is their autonomy compromised?It might be thought that the reasons for this decision not to know could be relevant. If they have no family history of any particular genetic disorder, it could be regarded as subjectively reasonable to decline such testing as might be offered. Anderson and Lux, however, argue that whether or not a self-assessment is accurate depends on externalities. In other words, A's self-assessment is not to be assessed as accurate, or [End Page 299] not, according to what it is subjectively reasonable to believe; it has to be measured against the facts. The more that the possibilities of genetic testing increase, the more that "facts" of this nature will be available, including in the context of psychiatry.It might be objected that genetic information is not the type of information that is relevant in this context. In so far as it is predictive and probabilistic it is, arguably, different from the type of diagnostic information involved in the cases discussed by Anderson and Lux. It is not the place here, however, to discuss in general terms the thesis of "genetic exceptionalism" with regard to medical information. The important point is refusal of access to information that may be relevant to an accurate self-assessment. Historically, people have been mistaken in their self-assessment because of lack of information—for example, lack of understanding of facts about the reproduction process has led individuals automatically to blame the woman partner of a couple for infertility. And, as Anderson and Lux rightly point out, being autonomous is compatible with making mistakes, and indeed requires the freedom to make mistakes, it would look rather different if a person continued to hold this without any attempt to avail himself of the relevant—and now available—information... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Significant Interests and the Right to KnowReuven Brandt (bio)1. IntroductionDaniel Groll's book Conceiving People (2021) attempts a novel and insightful defence of why individuals ought to choose open over anonymous gamete donation, barring any special circumstances. In broad strokes, the overall argument proceeds by defending three main claims: (1) that failing to disclose to children that they are donor-conceived is morally problematic, (2) that children who are informed that (...) they are donor-conceived (either intentionally by their social parents or otherwise) are likely to have a worthwhile, significant, subjective interest1 in having knowledge about their gamete donor(s), and (3) that parents have a duty to advance their children's worthwhile subjective significant interests. Groll's account departs from other criticisms of anonymous gamete donation in that it does not rest on the view that knowledge about one's genetic progenitors is essential to self-knowledge, identity formation, or other elements of wellbeing for creatures like us. The view thus attempts to avoid the pitfalls plaguing other criticisms of anonymous gamete donation, which tend to rely on controversial (and likely false) claims of genetic essentialism and/or genetic exceptionalism.Groll's thesis rests on the much more modest (and likely correct) claim that seeking information about one's genetic progenitors is one of many permissible, fruitful, and valuable routes to identity formation. According to Groll, it just so happens that a large portion of donor-conceived individuals aware of the absence of biological ties to one or more social parents choose this route to identity formation. And this empirical fact combined with plausible views about parents' obligations to promote their offspring's wellbeing gives prospective pro-creators strong reason to choose open donors over anonymous donors.Although many aspects of the picture Groll paints are attractive, I remain unconvinced that the overall argument succeeds. My criticism of the argument is multipronged. I am skeptical that failing to disclose to a child that they were donor-conceived and/or failing to disclose information to a child that they are [End Page 201] likely to find important violates the parental duty to build intimate relationships with one's offspring. This shifts the force of Groll's argument to the empirical claim that donor-conceived children are likely to have a significant subjective interest in knowing information about their biological relations. As I will show, the empirical evidence for this claim is not as strong as Groll presumes. In the absence of a deontic argument for disclosure, Groll must provide more robust empirical evidence that anonymous gamete donation is likely to result in off-spring with their weighty interests frustrated, or else argue that the risk is not worth taking. These are not fatal flaws but show that more empirical and normative work needs to be done to defend this line of argument.A more serious set of worries arise in response to Groll's claim that the interest that donor-conceived individuals have in genetic information is likely to be significant. Little is said about what constitutes a significant interest, except that interests fall along a linear spectrum and that the significance of an interest is a factor of "the space, so to speak, it takes up in a person's mental economy (do they think about it a lot?) and the extent to which they organize their lives around it" (2021, 63). My worries here are three-fold. First, it is unclear whether the empirical data support the claim that donor-conceived individuals are likely to have an interest in genetic knowledge that is significant in the sense that it occupies a large portion of their mental energy and is a locus around which they organize their lives. Second, there is scant discussion about whether an interest can become morally problematic (and so no longer worthwhile on Groll's account) if it is given too much weight. I will argue that a plausible reading of Groll's account requires that we treat overvalued interests as no longer worthwhile. Consequently, Groll's argument risks presuming the kind of genetic chauvinism—the view that genetic knowledge is essential to wellbeing—that he seeks to reject. Third, if... (shrink)

Genetics test in predictive medicine seems to take charge of the uniqueness of any human being. Unlike preventive medicine it moves from the theoretical assumption of the knowledge of a specific individual’s genetic structure and potential fragility. However, the attention paid to the gene risks placing the living and experienced body in the shadow. Sometimes, “genetic news” can make the subject in the present act like a sick person without being so, read every event in that direction, and, (...) ultimately, fulfill the prophecy. The article goes beyond the alleged non-exceptionalism of genetic data and discusses the symbolic value that the gene has assumed and its role in reflexivity and self-perception. (shrink)

Slightly modified excerpt from the section 13.4 Zusammenfassung und Ausblick (translated into englisch): This chapter is based on an analysis of ethical debates on epigenetics and genome editing, debates, in which ethical arguments relating to future generations and justice play a central role. The analysis aims to contextualize new developments in genetic engineering, such as genome and epigenome editing, ethically. At the beginning, the assumptions of "genetic determinism," on which "genetic essentialism" is based, of "epigenetic determinism" as (...) well as "genetic" and "epigenetic exceptionalism" are analyzed and critically discussed. The remarks on the ethical discourse on epigenetics show that the notion of "epigenetic determinism" can sometimes be discerned not only in popular scientific discourse but also in ethical discourse. Ethical debates on epigenetics, however, have distanced themselves from this deterministic understanding. As a result, the focus in the ethical discourse on epigenetics shifts from responsibility for one's own health and that of subsequent generations to justice. What is meant here is justice, for example, in terms of access to healthy environmental conditions, regardless of whether these contribute to health with or without epigenetic agency. An analysis of the discourse on genome editing reveals that it is primarily germline interventions that are being ethically examined, with a concentration on the aspect of inheritance. The question is whether this is accompanied by an implicit "genetic determinism" or even a "genetic essentialism": the determinism could lie in the centrality of the aspect of heritability, since only genetic information is inherited. Does the aspect of heritability and genome modification play a more decisive role in debates on genome editing than the safety issue? Is the problem of embryos and their potential offspring not being able to consent to germline intervention given such a high priority because it is a genetic intervention? Under such a premise of "strong genetic determinism" supplemented by "epigenetic determinism," not only genome editing but also epigenome editing would be ethically relevant precisely because it too would have an influence on the genome. How this influence of genome editing and epigenome editing is ethically evaluated in each case therefore depends initially on whether the assumptions of "genetic" and "epigenetic determinism" are advocated. These assumptions are increasingly viewed critically in ethical discourse because they cannot be confirmed from a scientific perspective. In popular scientific debates in particular, however, they seem to persist, which ultimately also influences the public discussion. Since a broad public discussion is required especially on genome editing, a reflective approach to the various "-isms" analyzed in this chapter is central. DOI: 10.5771/9783748927242. (shrink)

In answering the question 'what is special about the gene' from a literary perspective, the article suggests that if literary appreciation is often seen as a mark of human exceptionalism, knowledge of the gene may undermine this claim. Tracing some of the historical and philosophical complexities that circulate around the word 'gene', the article argues that in one sense 'the gene' plays the lead role in the latest 'story' about heredity to preoccupy novelists, scientists, and the literary and cultural (...) historians who have researched their shared interests and mutual borrowings. Reading Ian McEwan's recent novel Saturday (2005) in terms of the traditions of scientific and literary discourse that it draws upon and weaves together, the article argues that the literary craft may yet pose a distinctive challenge for the understanding of the place of genetics and literature in contemporary culture. (shrink)

UTILIZING MICHEL FOUCAULT'S CONCEPTION OF "PLAGUE" AS A DESCRIPtion of states of exception, this essay analyzes America's plans to genetically screen illegal immigrants. It argues that liberal democratic theory presupposes the exceptionalism of the nation-state and hence justifies sacrifices to appease the tragic order of things. The use of genetic technology in current American immigration policy instantiates these "necessary" sacrifices, extending agency and visibility in a never-ending struggle to foreclose every manner of contingency. In contrast, I offer a (...) "doxological" view of space that, eschewing this tragic economy, re-imagines the world by resisting foreclosure and "laboring" to remain open. After theorizing the genetic screening of illegal immigrants through Foucault's "plague" and Hans Jonas' work on sacrifice, I articulate the globalized nation-state as the exception for violence and conclude with political theology's more capacious view of space and cultural identity. (shrink)

Recently, ethicists have posited that consideration of epigenetic mechanisms presents novel challenges to concepts of justice and equality of opportunity, such as elevating the importance of environments in bioethics and providing a counterpoint to gross genetic determinism. We argue that new findings in epigenetic sciences, including those regarding intergenerational health effects, do not necessitate reconceptualization of theories of justice or the environment. To the contrary, such claims reflect a flawed understanding of epigenetics and its relation to genetics that may (...) unintentionally undermine appeals to social justice. We provide a brief summary of epigenetic sciences, focusing on phenomena central to the current ethical discourse. We identify three fallacious modes of reasoning arising from the emergent literature on the ethical and policy implications of epigenetics, including mischaracterization, undue extrapolation, and exceptionalism. We end by discussing how these issues may work against mobilizing health equity policies and present a more modest claim regarding the value of new epigenetic knowledge to health justice by setting this discourse within the context of known themes in biomedical ethics and health policy. (shrink)

The possibility of performing germline modifications on currently living individuals targets future generations’ health and well-being by reducing the diversity of the human gene pool. This can have two negative repercussions: reduction of heterozygosity, the latter being associated with a health or performance advantage; uniformization of the genes involved in reproductive recombination, which may lead to the health risks involved in asexual reproduction. I argue that germline interventions aimed at modifying the genomes of future people cannot be ethically justifiable if (...) there is no possibility of controlling the intervention either by reversing or altering it, whenever need demands it. This argument is challenged on six different grounds: safety, population versus individual focus, spontaneous mutations, exceptionalism, the intentional pursuit of genetic diversity through germline interventions, and harm reduction potential. (shrink)

Many contemporary logicians acknowledge a plurality of logical theories and accept that theory choice is in part motivated by logical evidence. However, just as there is no agreement on logical theories, there is also no consensus on what constitutes logical evidence. In this paper, I outline Jean Piaget’s psychological theory of reasoning and show how he used it to diagnose and solve one of the paradoxes of material implication. I assess Piaget’s use of psychology as a source of evidence for (...) logical theory in light of reservations raised by psychologism, and I highlight some ramifications for exceptionalism and anti-exceptionalism about logic by considering his use of psychology as logical evidence in the framework of genetic epistemology, Piaget’s research programme. I conclude that Piaget’s psychological theory of reasoning not only plausibly serves as a source of evidence for logical theory but also makes a strong case for anti-exceptionalism about logic. (shrink)

Mirko Garasic (2021) argued that space travel and, by extension, the colonization of other planets could morally justify using technologies and interventions capable of profoundly modifying the characteristics of astronauts and future Martian generations. According to Garasic, however, the fact that space interventions such as human (bio)enhancement or reproductive technologies such as artificial wombs may be morally justified does not mean that they are morally acceptable technologies to be used on Earth as well. Garasic’s thesis is that we should resist (...) the temptation to establish or reinforce a continuity between the ethical standards that apply to space travel and those that apply on Earth because what applies in space (or on other planets) does not necessarily apply to our planet. Garasic argues that in space, genetic enhancement interventions are morally acceptable, as they are essential for survival. On Earth, however, we can survive even without any form of (bio)enhancement. In a previous article (2022), we presented several arguments against Garasic’s thesis regarding the exceptional morality of what is morally acceptable in space. In this article, we examine and reply to Garasic (2022), showing that he fails to defend his thesis from the objections we previously advanced. Garasic’s mistakes are: (1) assuming nature (and consequently what is “natural”) as a normative point of reference which allows establishing what is moral and what is not moral; (2) defending the choices concerning reproduction as an insufficiently demanding and therefore unsatisfactory moral principle (according to Garasic we should not bring into the world people who can have a quality of life or a condition of well-being superior to mere survival); and finally (3) of not explaining clearly what it means to defend a principle of moral exceptionalism for space travel (Garasic does not explain whether this position applies to any behavior, for which what on Earth is a virtue, in space is a vice or is not a general principle, but he makes this case only for enhancement and reproductive technologies). Through our analysis, we not only refute Garasic’s position but also show that any attempt to address space travel issues as “special” moral issues faces several difficulties and, ultimately, is doomed to failure. (shrink)

Society has historically not taken a benign view of genetic disease. The laws permitting sterilization of the mentally re tarded~ and those proscribing consanguineous marriages are but two examples. Indeed as far back as the 5th-10th centuries, B.C.E., consanguineous unions were outlawed (Leviticus XVIII, 6). Case law has traditionally tended toward the conservative. It is reactive rather than directive, exerting its influence only after an individual or group has sustained injury and brought suit. In contrast, state legislatures have not (...) been inhibited in enacting statutes. Many of their products can be characterized as hasty, unnecessary, ill-conceived, and based on the heart rather than the head. Moreover the lack of expert consultation sought has also been remarkable. One state legislature, for example, has advocated immunization for sickle cell anemia! Many others have enacted laws for the screening of inborn errors of metabolism, e.g., phenylketon uria, but have poorly defined the lines of responsibility to secure compliance. A spate of specific disease-related bills has emerged in the u.S. Congress, each seeking recognition and appropriations. Sickle cell anemia, hemophilia, Cooley's anemia and Tay-Sachs disease have been among the front-runners for support. Finally, in 1975, Congress has begun to examine an omnibus bill concerning all forms of genetic disease. The bill, termed the National Genetic Diseases Act is, however, still far from being enacted. (shrink)

Signs and States, programme financé par l'ERG (European Research Council), a pour but d'explorer la sémiologie de l'Etat du XIIIe siècle au milieu du XVIIe siècle. Textes, performances, images, liturgies, sons et musiques, architectures, structures spatiales, tout ce qui contribue à la communication des sociétés politiques, tout ce qu'exprime l'idéel des individus et leur imaginaire, est ici passé au crible dans trois séries de rencontres dont les actes ont été rassemblés dans une collection, Le pouvoir symbolique en Occident (1300-1640). Ces (...) volumes, adoptant une perspective pluridisciplinaire et comparative dans une visée de long terme, combinent études de cas, analyses conceptuelles et réflexions plus théoriques. Et les réponses à ce questionnaire, issu d'une réflexion sur une histoire culturelle poursuivie sur plus de cinq siècles, remettent en cause une histoire de l'Occident latin où l'on opposerait Eglise et Etat : la mutation culturelle engendrée par la réforme grégorienne qui, tout en assurant d'abord le triomphe de la papauté, a donné à l'Etat moderne les moyens d'assurer sa propre légitimité en créant les conditions d'une révolution du système de communication. Elle engendre un partage du pouvoir symbolique et des processus de légitimation avec l'Etat : la capacité de ce dernier à se légitimer par le consentement de la société politique en dehors de la contingence religieuse est une spécificité de l'Occident latin, clé de l'essor des Etats modernes européens. (shrink)