Informed by a search of the literature about the usage of genetic testing information (GTI) by insurance companies, this paper presents a practical ethical analysis of several distinct public policy options that might be used to govern or constrain GTI usage by insurance providers. As medical research advances and the extension to the Human Genome Project (2016, https://en.wikipedia.org/wiki/human_genome_project_-_write) moves to its fullness over the next decade, such research efforts will allow the full synthesis of human DNA to be connected to (...) predictive health dispositions. As testing costs fall, there will be ever more pressure for citizens to disclose GTI. Genetic testing information is integral to future medical care because it can be used to better assess individually tailored medical therapies as well as to allow a more informed risk analysis by the insurance industry, which in some countries such as the USA underwrites a majority of citizen medical expenses. As discussed in this examination, the revelation of people’s uniquely personal GTI to insurers has enormous societal implications. The major contribution of the paper is to offer policy makers and concerned citizens a nuanced articulation of the basic options to regulate GTI, with a special consideration for ethical fairness and equity. As genetic-based medicine blossoms and pressures to reduce healthcare costs increase, there will be an ever greater impetus for countries to revisit their genetic testing policies. Organizations and policy makers striving to create GTI oversights perceived to be both “fair and effective” need to be aware of the ethical perspectives discussed in this paper. (shrink)

The mass movement of people across the globe constitutes a major feature of world politics today. -/- Whatever the cause of the movement - often war, famine, economic hardship, political repression or climate change - the governments of western capitalist states see this 'torrent of people in flight' as a serious threat to their stability and the scale of this migration indicates a need for a radical re-thinking of both political theory and practice, for the sake of political, social and (...) economic justice. -/- This book argues that there is at present a serious gap between the legal and social practices of immigration and naturalisation in liberal democratic states and any theoretical justification for such practices that can be made within the tradition of liberal political philosophy. How can liberal states develop institutions of democratic citizenship and at the same time justifiably exclude 'outsiders' from participating in those institutions? The book examines various responses to this contradiction within the liberal tradition, and finds none of them satisfactory - there are no consistently liberal justifications for immigration control and this has serious implications both for liberal practice and theory. (shrink)

From a twenty-first century partnership between bioethics and neuroscience, the modern field of neuroethics is emerging, and technologies enabling functional neuroimaging with unprecedented sensitivity have brought new ethical, social and legal issues to the forefront. Some issues, akin to those surrounding modern genetics, raise critical questions regarding prediction of disease, privacy and identity. However, with new and still-evolving insights into our neurobiology and previously unquantifiable features of profoundly personal behaviors such as social attitude, value and moral agency, the difficulty of (...) carefully and properly interpreting the relationship between brain findings and our own self-concept is unprecedented. Therefore, while the ethics of genetics provides a legitimate starting point - even a backbone - for tackling ethical issues in neuroimaging, they do not suffice. Drawing on recent neuroimaging findings and their plausible real-world applications, we argue that interpretation of neuroimaging data is a key epistemological and ethical challenge. This challenge is two-fold. First, at the scientific level, the sheer complexity of neuroscience research poses challenges for integration of knowledge and meaningful interpretation of data. Second, at the social and cultural level, we find that interpretations of imaging studies are bound by cultural and anthropological frameworks. In particular, the introduction of concepts of self and personhood in neuroimaging illustrates the interaction of interpretation levels and is a major reason why ethical reflection on genetics will only partially help settle neuroethical issues. Indeed, ethical interpretation of such findings will necessitate not only traditional bioethical input but also a wider perspective on the construction of scientific knowledge. (shrink)

The emergence of the genetic counseling profession has allowed laypeople to understand and benefit from biological advances, and to make critical decisions about their application. The discipline of genetic counseling has been criticized from its very beginning, in particular because of its early association with the eugenics movement. This paper presents a critical and reflective overview of how genetic counseling is implicitly embedded in the history of eugenics but also counteracts past eugenic practices and ideas. After World War II, attempts (...) were made to distance genetic counseling from eugenics. The first definition of genetic counseling did not position this field as a medical encounter but "as a kind of genetic social work aimed primarily to provide people with an understanding of their family's genetics problems." This approach was a reaction to the genetic and social evolutionary ideas that informed eugenic theories during the first half of the 20th century. Professionals engaged in genetic counseling during the 1940s and1950s rejected eugenic practices, but there was still support for eugenics’ goals of improving heredity and eliminating disease. From the 1960s, genetic counseling underwent professionalization alongside feminization and a definition of core values. Among these values were nondirectiveness counseling and the autonomy of the counselee. The dark shadow of Nazi ideology and other eugenic practices, attempts to employ the historical responsibility of geneticists, and the dynamic medical, social, political, and educational changes of the 1960s and 1970s helped to frame approaches and delineate the goals and limits of the new profession of “genetic counseling.”. (shrink)

Controlled Human Infection Model (CHIM) research involves the infection of otherwise healthy participants with disease often for the sake of vaccine development. The COVID-19 pandemic has emphasised the urgency of enhancing CHIM research capability and the importance of having clear ethical guidance for their conduct. The payment of CHIM participants is a controversial issue involving stakeholders across ethics, medicine and policymaking with allegations circulating suggesting exploitation, coercion and other violations of ethical principles. There are multiple approaches to payment: reimbursement, wage (...) payment and unlimited payment. We introduce a new Payment for Risk Model, which involves paying for time, pain and inconvenience and for risk associated with participation. We give philosophical arguments based on utility, fairness and avoidance of exploitation to support this. We also examine a cross-section of the UK public and CHIM experts. We found that CHIM participants are currently paid variable amounts. A representative sample of the UK public believes CHIM participants should be paid approximately triple the UK minimum wage and should be paid for the risk they endure throughout participation. CHIM experts believe CHIM participants should be paid more than double the UK minimum wage but are divided on the payment for risk. The Payment for Risk Model allows risk and pain to be accounted for in payment and could be used to determine ethically justifiable payment for CHIM participants.Although many research guidelines warn against paying large amounts or paying for risk, our empirical findings provide empirical support to the growing number of ethical arguments challenging this status quo. We close by suggesting two ways (value of statistical life or consistency with risk in other employment) by which payment for risk could be calculated. (shrink)

The Centers for Disease Control and Prevention (CDC) recently recommended that HIV screening should become routine for all adults in the United States. Implicit in the CDC proposal is the notion that pre-test counseling would be more limited than at present, and that written informed consent to screening would no longer be required. If widely implemented, routine testing would mark a tremendous shift in the US HIV screening strategy. There are a number of considerations used to determine what screening tests (...) should be routine, and HIV fits the bill in almost every regard. Yet the stigma associated with HIV infection remains, making the CDC's recommendation highly controversial. Will minimizing requirements for pre-test counseling and special written informed consent lead to unexpected or unwanted HIV testing, or do these stringent counseling and consent requirements needlessly scare people away? Will widespread and routine testing be associated with declining stigmatization, or will it drive some patients away from seeking desperately needed health care? These are high stakes questions, and we're about to find out the answers. (shrink)

In 2016, a law came into force in France granting terminally ill patients the right to continuous deep sedation until death. This right was proposed as an alternative to euthanasia and presented as the ‘French response’ to problems at the end of life. The law draws a distinction between CDS and euthanasia and other forms of sympton control at the end of life. France is the first country in the world to legislate on CDS. This short report describes the particular (...) context and underlying social values that led to this piece of legislation, and explores its meaning in the wider French context. (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)

Slippery slope‐, taboo‐breaking‐ or Nazi‐analogy‐arguments are common, but not uncontroversial examples of the complex relationship between bioethics and the various ways of using historical arguments in these debates. In our analysis we examine first the relationship between bioethics and medical history both as separate disciplines and as argumentative practices. Secondly, we then analyse six common types of historical arguments in bioethics (slippery slope‐, analogy‐, continuity‐, knockout/taboo‐, ethical progress‐ and accomplice‐arguments), some as arguments within the academic debate of bioethics, others as (...) arguments within political and public debates over bioethical issues. We conclude by suggesting to bioethicists to better understand historical arguments as socially and culturally embedded practices of critical reflection of power, medical and government paternalism and possible future scenarios. More interdisciplinarity between ethicists and medical historians is needed to appropriately rationalize and understand the different legacies. (shrink)

What has come to be called critical disability studies is an emergent field of academic research, teaching, theory building, public scholarship, and something I'll call "educational advocacy." The critical part of critical disability studies suggests its alignment with areas of intellectual inquiry, sometimes awkwardly called identity studies, rooted in the political and social transformations of the mid-20th century brought forward by the broad civil and human rights movement. These movements pressed both the law and the social order toward an expansion (...) of rights for people previously marginalized or excluded from full participation in exercising the obligations and benefits of equal citizenship. The ideas of... (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)

Research involving human subjects is much more stringently regulated than many other nonresearch activities that appear to be at least as risky. A number of prominent figures now argue that research is overregulated. We argue that the reasons typically offered to justify the present system of research regulation fail to show that research should be subject to more stringent regulation than other equally risky activities. However, there are three often overlooked reasons for thinking that research should be treated as a (...) special case. First, research typically involves the imposition of risk on people who do not benefit from this risk imposition. Second, research depends on public trust. Third, the complexity of the moral decision making required favors ethics committees as a regulative solution for research. (shrink)

Common understandings of neuroethics, i.e., of its distinctive nature, are premised on two distinct sets of claims: (1) neuroscience can change views about the nature of ethics itself and neuroethics is dedicated to reaping such an understanding of ethics; (2) neuroscience poses challenges distinct from other areas of medicine and science and neuroethics tackles those issues. Critiques have rightfully challenged both claims, stressing how the first may lead to problematic forms of reductionism while the second relies on debatable assumptions about (...) the nature of bioethics specialization and development. Informed by philosophical pragmatism and our experience in neuroethics, we argue that these claims are ill-founded and should give way to pragmatist reconstructions. Namely, neuroscience, much like other areas of empirical research on morality, can provide useful information about the nature of morally problematic situations but it does not need to promise radical and sweeping changes to ethics based on neuroscientism. Furthermore, the rationale for the development of neuroethics as a specialized field need not to be premised on the distinctive nature of the issues it tackles or of neurotechnologies. Rather, it can espouse an understanding of neuroethics as both a scholarly and a practical endeavor dedicated to resolving a series of problematic situations raised by neurological and psychiatric conditions. (shrink)

During the AIDS epidemic in the 1980s, it was crucial that providers take steps to protect patients by managing HIV with the perspective of ‘HIV exceptionalism’. However, in 2020, the social and historical barriers erected by this concept, as demonstrated in this patient’s case, are considerably impeding progress to end the epidemic. With significant medical advances in HIV treatment and prevention, the policies informed by HIV exceptionalism now paradoxically perpetuate stigma and inequities, particularly for people of colour. To improve overall (...) HIV care, the medical community must move past HIV exceptionalism by liberalising diagnostics, instituting clinician implicit bias training and advocating to fully decriminalise HIV non-disclosure. (shrink)

The principles that usually direct ethical decision making are not easily or straightforwardly applicable to the care and treatment of anorexia nervosa, particularly the care and treatment of severe and enduring anorexia nervosa, where the sufferer seems to be recalcitrant to treatment and where the condition has become life-threatening.There are exceptional circumstances that characterize this puzzling and still scarcely understood condition; I suggest that these exceptional circumstances provide moral reasons for partial derogation from the usual principles of ethical decision making.In (...) what follows I argue... (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)

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)

Antibiotic resistance, arising when bacteria develop defences against antibiotics, is creating a public health threat of massive proportions. This raises challenging questions for standard notions in bioethics when suitable policy is to be characterized and justified. We examine the particular proposal of expediting innovation of new antibiotics by cutting various forms of regulatory ‘red tape’ in the standard system for the clinical introduction of new drugs. We find strong principled reasons in favour of such a lowering of the ethical standards (...) of research and the clinical introduction of new antibiotic formulas. However, this support is undermined by pragmatic challenges owing to expected responses from stakeholders, creating uncertainty about which policies could actually be effectively implemented. We describe an underlying dilemma on how to rationally justify compromises between ideal ethical justification and pragmatic risks that needs to be further addressed in this light. We suggest a solution to this dilemma related to proposals of expediting antibiotic drug innovation. (shrink)

In 2016, a law came into force in France granting terminally ill patients the right to continuous deep sedation until death. This right was proposed as an alternative to euthanasia and presented as the ‘French response’ to problems at the end of life. The law draws a distinction between CDS and euthanasia and other forms of sympton control at the end of life. France is the first country in the world to legislate on CDS. This short report describes the particular (...) context and underlying social values that led to this piece of legislation, and explores its meaning in the wider French context. (shrink)