In a contribution to The Journal of Medicine and Philosophy , Professor Rosamond Rhodes argues that individuals sometimes have an obligation to know about their genetic disorders, because this is required by their status as autonomous persons. Her analysis, which is based on Kant's concept of autonomy and Aristotle's notion of friendship, is extended here to consequentialist concerns. These are of paramount importance if, as we believe and Professor Rhodes herself implies, the Kantian and Aristotelian doctrines can be helpful (...) only in the sphere of private morality, not in the public realm. Better tools for assessing the right to genetic ignorance as an issue of public policy can, we contend, be found in Mill's ideas concerning liberty and the prevention of harm. Our own conclusion, based on the Millian way of thinking, is that individuals probably do have the right to remain in ignorance in the cases Professor Rhodes presents as examples of a duty to know. (shrink)

The question concerning an individual''s rightto remain in ignorance regarding her owngenetic makeup is central to debates aboutgenetic information. Whatever is decided onthis matter has a weighty bearing on all of therelated third-party issues, such as whetherfamily members or employers should be toldabout an individual''s genetic makeup. Thosearguing that no right to genetic ignoranceexists tend to argue from a viewpoint I havecalled in this paper reasonablepaternalism. It is an appealing position whichrests on widely shared intuitions on reasonablechoices, (...) but which, in the end, smugglespaternalism back to medical practice. (shrink)

One of the much debated issues around the evolving human genetics is the question of the right to know versus the right not to know. The core question of this theme is whether an individual has the right to know about her own genetic constitution and further, does she also have the right to remain in ignorance. Within liberal traditions it is usually held that people, if they so wish, have the right to all the knowledge available about (...) themselves. This right is based on the value of autonomy or on the right of self‐determination, and it is sometimes partly justified as a countermeasure to the authorities' control over people. I do not wish to deny the right to genetic knowledge (about oneself). I think that its existence is self‐evident. The argument I want to put forth in this paper is that in liberal societies we should acknowledge people’s right to remain in ignorance as well. The only reason for not doing this would be that grave harm to others would follow if people were allowed to make these seemingly self‐regarding decisions. Arguments presented against the right to ignorance are twofold. First there are those arguing against the right to ignorance on the grounds of harm to others, that is, philosophers who do not deny people’s right to ignorance in self‐related matters but wish to state that genetic ignorance causes harm to others, and this is one of the most commonly accepted reason for restricting people’s freedom. The other line of argument flows from the Kantian view that not even merely self‐regarding foolishness (in the eyes of others) should be allowed. (shrink)

ABSTRACT This paper examines some arguments which deny the existence of an individual right to remain ignorant about genetic information relating to oneself – often referred to as ‘a right to genetic ignorance’ or, more generically, as ‘a right not to know’. Such arguments fall broadly into two categories: 1) those which accept that individuals have a right to remain ignorant in self‐regarding matters, but deny that this right can be extended to genetic ignorance, since (...) such ignorance may be harmful to others, particularly those to whom one is genetically related (the ‘harm to others objection’) and 2) those which contend that, even if genetic ignorance is only self harming, it is not something to which individuals can rationally or morally claim to have a ‘right’ at all, since they defend their claims on autonomy‐respecting grounds and ignorance is inimical to autonomy (the ‘incoherence objection’). I argue that defenders of a right not to know have some plausible responses to the ‘harm to others objection’, but that in trying to respond to the ‘incoherence objection’, they and their opponents reach an impasse in which both sides are left voicing concerns about the paternalistic implications of the other's point of view. I conclude that defenders of a right not to know would, therefore, advance their position further by analysing it in terms of values other than those of autonomy and rights. (shrink)

This paper discusses whether prospectiveparents ought to find out about their geneticconstitution for reproductive reasons. It isargued that ignoring genetic information can bein line with responsible parenthood or perhapseven recommendable. This is because parenthoodis essentially an unconditional project inwhich parents ought to commit themselves tonurturing any kind of child. Besides, thetraditional reasons offered for theunfortunateness of impairments and the tragicfate of families with disabled children are notconvincing. Other morally problematic outcomesof genetics, such as discrimination againstindividuals with impairments, and limiting (...) freeparental decision making, are alsoconsidered. (shrink)

As knowledge increases about the human genome,prenatal genetic testing will become cheaper,safer and more comprehensive. It is likelythat there will be a great deal of support formaking prenatal testing for a wide range ofgenetic disorders a routine part of antenatalcare. Such routine testing is necessarilycoercive in nature and does not involve thesame standard of consent as is required inother health care settings. This paper askswhether this level of coercion is ethicallyjustifiable in this case, or whether pregnantwomen have a right (...) to remain in ignorance ofthe genetic make-up of the fetus they arecarrying. While information gained by genetictesting may be useful for pregnant women whenmaking decisions about their pregnancy, it doesnot prevent harm to future children. It isargued that as this kind of testing providesinformation in the interests of the pregnantwomen and not in the interests of any futurechild, the same standards of consent that arenormally required for genetic testing should berequired in this instance. (shrink)

Many countries have imposed strict regulations on the genetic information to which insurers have access. Commentators have warned against the emerging body of legislation for different reasons. This paper demonstrates that, when confronted with the argument that genetic information should be available to insurers for health insurance underwriting purposes, one should avoid appeals to rights of genetic privacy and genetic ignorance. The principle of equality of opportunity may nevertheless warrant restrictions. A choice-based account of this (...) principle implies that it is unfair to hold people responsible for the consequences of the genetic lottery, since we have no choice in selecting our genotype or the expression of it. However appealing, this view does not take us all the way to an adequate justification of inaccessibility of genetic information. A contractarian account, suggesting that health is a condition of opportunity and that healthcare is an essential good, seems more promising. I conclude that if or when predictive medical tests (such as genetic tests) are developed with significant actuarial value, individuals have less reason to accept as fair institutions that limit access to healthcare on the grounds of risk status. Given the assumption that a division of risk pools in accordance with a rough estimate of people's level of (genetic) risk will occur, fairness and justice favour universal health insurance based on solidarity. (shrink)

The recent expansion of online genetic-genealogical networks has been hailed as a development that could break racial taboos in the United States by providing irrefutable evidence of the myriad historical and genetic links—many originating in slavery—connecting white and black families. These predictions are countered, however, by a scholarly literature on “white ignorance,” defined as an active historical project that works to prevent privileged groups from apprehending their links to, and positionality within, systems of racial oppression. This paper (...) mobilizes concepts from the fields of agnotology and epistemic ethics to assess how far genetic-genealogical technologies can contribute to redressing racialized epistemic inequities between slave and slaveholder descendants, by inducing the latter to respond to the former’s kinship claims and give access to data that could help reconstruct their linked family histories. Drawing on ethnographic and interview data that foreground the experiences of African American genealogists, the study outlines the structural and affective dimensions that have converged to enable white ignorance regarding genealogies of slavery and discusses ethical and technical solutions proposed by genealogical practitioners to redress the racialized power dynamics that continue to condition access to, and public acceptance of, family history knowledge relating to slavery. (shrink)

sir I was delighted to read a scholarly defence of the notions of interconnectedness and responsibility to others as they apply to genetic privacy.1 Many of the same ethical principles that apply to providing medical care also apply to conducting research. Concepts of genetic privacy are evolving, and these concepts can have a profound effect on the conduct of genetic and genealogical research. In the United States, there seems to be an emphasis on ….

This paper spells out and discusses four assumptions of the deficit model type of thinking. The assumptions are: First, the public is ignorant of science. Second, the public has negative attitudes towards (specific instances of) science and technology. Third, ignorance is at the root of these negative attitudes. Fourth, the public’s knowledge deficit can be remedied by one-way science communication from scientists to citizens. It is argued that there is nothing wrong with ignorance-based explanations per se. Ignorance (...) accounts at least partially for many cases of opposition to specific instances of science and technology. Furthermore, more attention needs to be paid to the issue of relevance. In regard to the evaluation of a scientific experiment, a technology, or a product, the question is not only who knows best?, but also what knowledge is relevant and to what extent?. Examples are drawn primarily from the debate on genetic engineering in agriculture. (shrink)

Currently, some of the most significant moral issues involving genetic links relate to genetic knowledge. In this paper, instead of looking at the frequently addressed issues of responsibilities professionals or institutions have to individuals, I take up the question of what responsibilities individuals have to one another with respect to genetic knowledge. I address the questions of whether individuals have a moral right to pursue their own goals without contributing to society's knowledge of population genetics, without adding (...) to their family's knowledge of its genetic history, and without discovering genetic information about themselves and their offspring. These questions lead to an examination of the presumed right to genetic ignorance and an exploration of a variety of social bonds. Analyzing cases in light of these considerations leads to a surprising conclusion about a widely accepted precept of genetic counseling, to some ethical insights into typical problems, and to some further unanswered questions about personal responsibility in the face of genetic knowledge. (shrink)

In popular articles that play down the genetical differences among human populations, it is often stated that about 85% of the total genetical variation is due to individual differences within populations and only 15% to differences between populations or ethnic groups. It has therefore been proposed that the division of Homo sapiens into these groups is not justified by the genetic data. This conclusion, due to R.C. Lewontin in 1972, is unwarranted because the argument ignores the fact that most (...) of the information that distinguishes populations is hidden in the correlation structure of the data and not simply in the variation of the individual factors. The underlying logic, which was discussed in the early years of the last century, is here discussed using a simple genetical example. (shrink)

The current explosion of genetic knowledge and the rapid proliferation of genetic tests has rightly provoked concern that we are approaching a future in which people will be labeled and disadvantaged based on genetic information. Indeed, some have already suffered harm, including denial of health insurance. This concern has prompted an outpouring of analysis. Yet almost all of it approaches the problem of genetic disadvantage under the rubric of “genetic discrimination.”This rubric is woefully inadequate to (...) the task at hand. It ignores years of commentary on race and gender demonstrating the limits of antidiscrimination analysis as an analytic framework and corrective tool. Too much discussion of genetic disadvantage proceeds as if scholars of race and gender had not spent decades critiquing and developing antidiscrimination theory.Indeed, there are multiple links among race, gender, and genetics. Dorothy Roberts has discussed the historical links between racism and genetics, while she and others have begun to map connections between gender and genetics. (shrink)

The debate over the host of moral issues that genetic enhancement technology (GET) raises has been significant. One argument that has been advanced to impugn its moral legitimacy is the ‘unfair advantage argument’ (UAA), which states: allowing access to GET to be determined by socio-economic status would lead to unjust outcomes, namely, create a genetic caste system, and with it the exacerbation and perpetuation of existing socio-economic inequalities. Fritz Allhoff has recently objected to the argument, the kernel of (...) which is that it conflates the use of the technology with its distribution. GET, he argues, would generate unjust outcomes only if it is distributed according to principles of an unjust pattern of distribution; for if we can determine what constitutes a ‘just’ distributive scheme, then the technology can be allocated according to the principles of that scheme. In this paper I argue the following cluster of related claims: (1) both UAA and Allhoff's proposed distributive schemes ignore the importance of non-genetic factors in the development of an individual's characteristics and capacities; (2) if we accept the view that it is good to prevent unjust outcomes that arise because some have exclusive access to GET, then we have to accept wide-ranging distributive schemes; (3) by tracking genetic and non-genetic factors wide-ranging schemes do violate in some sense the widely shared value of neutrality in liberal democracies. (shrink)

Scientists, the medical profession, philosophers, social scientists, policy makers, and the public at large have been quick to embrace the accomplishments of genetic science. The enthusiasm for the new biotechnologies is not unrelated to their worthy goal. The belief that the new genetic technologies will help to decrease human suffering by improving the public’s health has been a significant influence in the acceptance of technologies such as genetic testing and screening. But accepting this end should not blind (...) us to the need for an evaluation of whether a particular means is adequate to achieve it. Lack of such evaluation notwithstanding, discussions of the ethical, legal, and social implications have tended to presuppose that the development and implementation of genetic testing will be an appropriate means to reduce human suffering in significant ways. I argue here that such an assumption is mistaken. In part this is the case because human biology is more complex than sometimes it is made to appear in these debates. But, the idea that human suffering resulting from disease can be reduced in significant ways with the use of genetic testing also ignores the social contexts in which these technologies are being developed and implemented. (shrink)

Racial disparities in pain treatment are well documented. Such disparities are explained with reference to factors related to providers, health care structures, and patient behaviors. Racial differences in pain experiences, although well documented, are less well understood. Explanations for such differences usually involve genetic or psychological factors. Here, we argue that racial differences in pain experiences might also be explained by disparities in pain treatment. Based on what we know about the nature of pain, particularly the cognitive and affective (...) aspects of the phenomenon, it is likely that disparities in the treatment of racialized patients can lead to significant racial differences in pain experience that show up at the population level. We argue that the failure of research programs to consider this causal factor is an example of white ignorance. We also consider several implications of the link between racial disparities in pain treatment and racial differences in pain experience. (shrink)

In an article recently published in this journal, I raised a puzzle about the control of genetic information, suggesting a situation in which it might turn out that we have a duty to remain in ignorance about at least some aspects of our own genome. In this article, I propose a way that would make sense of how the puzzle arises, and offer a way to resolve it and similar puzzles in future: in essence, we would consider (...) class='Hi'>genetic information to be something the distribution of which may be more or less just. We would not know in advance what a just distribution would be, though, and in some cases there might still be a justice-based reason to deny a person genetic information about himself. However, others might also have justice-based claims to be able to access that information. This suggests that there is a possible world in which one person is entitled to at least some genetic information about another, while that other person—to whom the information refers—is not, and that this world would be just. (shrink)

One of the most difficult issues to sort out morally is our obligation to future generations. Most individuals feel that they do indeed have some kind of obligation, but face difficulty in explaining the exact nature of the obligation. For one, it seems impossible to know the wants and desires of future generations, and furthermore the existence of the persons we are obligated to is entirely dependent upon the choices that we in fact make. In essence, we could shape future (...) generations so that they desire exactly what we provide for them. It seems that no matter what principle we adopt that is based upon these potential individuals we are led to absurd conclusions. Gregory Kavka calls this moral grappling the Paradox of Future Individuals. I believe that the ethical concerns surrounding genetic engineering should be seen as a specific instantiation of this Paradox and that by examining both we may be able to come up with some sort of working solution. Derek Parfit pleads ignorance as to a solution to this Paradox after an extensive exegesis on the issue, but as we may not be that far from shopping a genetic supermarket to determine the characteristics of our children I don’t believe we can settle for that conclusion. We will begin by examining the Paradox and suggested solutions to the Paradox. Next I will address how the Paradox relates directly to genetic engineering and discuss how rights-based arguments aimed against genetic engineering fail because of the nature of identity. Then I will consider how David Heyd’s Genero-centric principle applies to genetic engineering specifically and how a modified version of that principle may guide us out of the Paradox of Future Individuals in general. This solution may not be acceptable to utilitarian sensibilities, but it is because the numbers don’t add up that we may need to appeal to a different principle entirely. (shrink)

Drawing on philosophy, social and psychoanalytic theory, popular culture, and her own experience, Salecl explores how the passion for ignorance plays out in many different aspects of life today, from love, illness, trauma, and the fear of failure to genetics, forensic science, big data, and the Incel movement-and she concludes that ignorance is a complex phenomenon that can, on occasion, benefit individuals and society as a whole.

There is concern that human applications of modern genetic technologies may lead inexorably to eugenic abuse. To prevent such abuse, it is essential to have clear, formal principles as well as algorithms for distinguishing genetics from eugenics. This work identifies essential distinctions between eugenics and genetics in the implied nature of the social contract and the importance ascribed to individual welfare relative to society. Rawls's construction of 'justice as fairness' is used as a model for how a formal systems (...) of ethics can be used to proscribe eugenic practices. Rawls's synthesis can be applied to this problem if it is assumed that in the original condition all individuals are ignorant of their genetic constitution and unwilling to consent to social structures which may constrain their own potential. The principles of fairness applied to genetics requires that genetic interventions be directed at extending individual liberties and be applied to the greatest benefit of individuals with the least advantages. These principles are incompatible with negative eugenics which would further penalize those with genetic disadvantage. These principles limit positive eugenics to those practices which are designed to provide absolute benefit to those individuals with least advantage, are acceptable to its subjects, and further a system of basic equal liberties. This analysis also illustrates how simple deviations from first principles in Rawls's formulation could countenance eugenic applications of genetic technologies. (shrink)

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)

This article is a revised version of a talk given in lieu of the Ph.D. dissertation: "Huntington´s Disease in Everyday Life. Knowledge, Ignorance and Genetic Risk". The dissertation evolves around the analysis of modern living with risk for a late onset genetic disorder. Here, three aspects of everyday lives faced with Huntington´s Disease (HD) are discussed. First, HD is one aspect of everyday living along with a variety of other aspects. The importance of risk is analysed as (...) personal and changing in changing circumstances. Second, genetic knowledge and technology are not solid universals, but situated and changing, and of varying importance in lives at risk. Last, the ethical rationalities of everyday living, research and clinical practice concerned with a hereditary condition are discussed as complex and contradictory in and across structures of social practice. (shrink)

Scientists, the medical profession, philosophers, social scientists, policy makers, and the public at large have been quick to embrace the accomplishments of genetic science. The enthusiasm for the new biotechnologies is not unrelated to their worthy goal. The belief that the new genetic technologies will help to decrease human suffering by improving the public’s health has been a significant influence in the acceptance of technologies such as genetic testing and screening. But accepting this end should not blind (...) us to the need for an evaluation of whether a particular means is adequate to achieve it. Lack of such evaluation notwithstanding, discussions of the ethical, legal, and social implications have tended to presuppose that the development and implementation of genetic testing will be an appropriate means to reduce human suffering in significant ways. I argue here that such an assumption is mistaken. In part this is the case because human biology is more complex than sometimes it is made to appear in these debates. But, the idea that human suffering resulting from disease can be reduced in significant ways with the use of genetic testing also ignores the social contexts in which these technologies are being developed and implemented. (shrink)

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

The purpose of this paper is to show that a decontextualized approach to ethical issues is not just unhelpful for the decision making process of real, situated human beings, but dangerous. This is so, because by neglecting the context in which people make moral decisions we run the risk of reinforcing or furthering injustices against already disadvantaged groups. To show this, I evaluate three moral obligations that our ability to obtain genetic information has made salient: the duty to obtain (...) genetic information about ourselves, the obligation to inform family members about genetic risks and the duty not to reproduce when we know that there is a high risk of transmitting a serious disease or defect. I will argue here that in ignoring the context in which these moral obligations are put into practice, and in particular the situation of women in our society, those who defend these moral duties might be furthering injustices against women. (shrink)

Jürgen Habermas has argued against prenatal genetic interventions used to influence traits on the grounds that only biogenetic contingency in the conception of children preserves the conditions that make the presumption of moral equality possible. This argument fails for a number of reasons. The contingency that Habermas points to as the condition of moral equality is an artifact of evolutionary contingency and not inviolable in itself. Moreover, as a precedent for genetic interventions, parents and society already affect children's (...) traits, which is to say there is moral precedent for influencing the traits of descendants. A veil-of-ignorance methodology can also be used to justify prenatal interventions through its method of advance consent and its preservation of the contingency of human identities in a moral sense. In any case, the selection of children's traits does not undermine the prospects of authoring a life since their future remains just as contingent morally as if no trait had been selected. Ironically, the prospect of preserving human beings as they are – to counteract genetic drift – might even require interventions to preserve the ability to author a life in a moral sense. In light of these analyses, Habermas' concerns about prenatal genetic interventions cannot succeed as objections to their practice as a matter of principle; the merits of these interventions must be evaluated individually. (shrink)

This paper discusses the discourse of ‘participation’ in the context of genetic databases. Focusing on UK Biobank, it suggests that this discourse can be seen as a reflexive institutional response to public ambivalence towards science and expertise. Drawing on empirical evidence from focus groups, I explore how people from various backgrounds constructed and contested two different kinds of participation in UK Biobank. The first relates to people providing research materials to genetic databases and the second to people becoming (...) ‘co-decision makers’ in these projects. My analysis highlights how focus groups positioned themselves and others in relation to UK Biobank and drew on a variety of ‘discursive repertoires’, such as altruism, public ignorance, expertise, and lay empowerment. I conclude that discourses of participation reflect the way people position themselves and others - as experts, publics, patients, or research subjects - in relation to the opportunities and uncertainties of new biomedical research. (shrink)

This paper evaluates Sara Goering’s recent attempt to use the Rawlsian notion of the veil of ignorance as a tool for distinguishing permissible from impermissible forms of genetic engineering. I argue that her article fails due to a failure to include vital contextual information in the right way.

The importance of socio-economic impacts from the introduction and use of genetically modified crops is reflected in increasing efforts to include them in regulatory frameworks. Aiming to identify and understand the present knowledge on SEI of GM crops, we here report the findings from an extensive study of the published international scientific peer-reviewed literature. After applying specified selection criteria, a total of 410 articles are analysed. The main findings include: limited empirical research on SEI of GM crops in the scientific (...) literature; the main focus of the majority of the published research is on a restricted set of monetary economic parameters; proportionally, there are very few empirical studies on social and non-monetary economic aspects; most of the research reports only short-term findings; the variable local contexts and conditions are generally ignored in research methodology and analysis; conventional agriculture is the commonly used comparator, with minimal consideration of other substantially different agricultural systems; and there is the overall tendency to frame the research upon not validated theoretical assumptions, and to over-extrapolate small-scale and short-term specific results to generalized conclusions. These findings point to a lack of empirical and comprehensive research on SEI of GM crops for possible use in decision-making. Broader questions and improved methodologies, assisted by more rigorous peer-review, will be required to overcome current research shortcomings. (shrink)

Risk governance of GM plants and GMfood products is presently subject to heatedscientific and public controversies. Scientistsand representatives of the biotechnologyindustry have dominated debates concerningsafety issues. The public is suspicious withregard to the motives of scientists, companies,and political institutions involved. Thedilemmas posed are nested, embracing valuequestions, scientific uncertainty, andcontextual issues. The obvious lack of data andinsufficient information concerning ecologicaleffects call for application of thePrecautionary Principle (PP). There are,however, divergent opinions among scientistsabout the relevance of putative hazards,definition of potential ``adverse effects,'' (...) andwhether actions should be taken to preventharm. The reliance on the concept ofsubstantial equivalence in safety evaluation ofGM food is equally controversial. Consequently,value assumptions embedded in a scientificframework may be a barrier for employment ofthe PP. One of our major conclusions is thatprecautionary GMP usage requires riskassessment criteria yet undeveloped, as well asbroader and more long-term conceptions of risk,uncertainty, and ignorance. Conflicts ofinterest and public participation are otherissues that need to be taken intoconsideration. GMP governance regimes that arejustifiable from a precautionary and ethicalpoint of view must transcend traditionalscientific boundaries to include alternativescientific perspectives as well as publicinvolvement. (shrink)

The research program Spit For Science was launched at Virginia Commonwealth University (VCU) in 2011. Since then, more than 10,000 freshmen have been enrolled in the program, filling out extensive questionnaires about their drinking, general substance use, and related behaviors, and also contributing saliva for genotyping. The goals of the program, as initially stated by the investigators, were to find the genes underlying the heritability of alcohol use and related behaviors, and in addition to put genetic knowledge to work (...) in ways that might aid university administrators and mental health professionals in the prevention and treatment of substance abuse. We review every empirical paper involving genetic data that has emerged from the program, and reach a surprising conclusion: the study has never identified a single genetic effect of more than trivial magnitude. Although the quantitative results of the studies were reported transparently, the theoretical ramifications of the negligible results have never been acknowledged. To the contrary, most of the papers ignore the tiny effects, reaching optimistic conclusions about the prospects for future genetic explanations of alcohol use. We explore the implications of these results for the broader prospects of applied psychiatric genetics. (shrink)

As our scientific and technical abilities expand at breathtaking speeds, concern that modern genetics and bioengineering are leading us to a posthuman future is growing. Is Human Nature Obsolete? poses the overarching question of what it is to be human against the background of these current advances in biotechnology. Its perspective is philosophical and interdisciplinary rather than technical; the focus is on questions of fundamental ontological importance rather than the specifics of medical or scientific practice.The authors -- all distinguished scholars (...) in their fields -- take on questions about technology's goals and values that are often ignored or sidelined in the face of rapid scientific advances and the highly specialized nature of technical knowledge. The essays included represent a rich variety of thought, ranging from finely nuanced philosophical and theological arguments to historical studies and cultural commentaries. Several explore the historical background of today's biotechnology: Timothy Casey traces such developments as the emergence of cybernetic humanity from Cartesian dualism, and Diane Paul presents the history of "positive" versus coerced eugenics. Jean Bethke Elshtain discusses cloning as a "messianic project" to perfect the body and exclude natural diversity -- giving as an example the elimination of Down Syndrome as an acceptable human type -- while Harold Baillie calls for an examination of the metaphysical roots of personhood. Robert Proctor finds no evidence in paleontology for any "essence of humanity," and Tom Shannon argues against materialist reductionism. Addressing social concerns, Lisa Sowle Cahill finds the possibility of a political solution to the problems raised by genetic engineering in Catholic teachings on social justice, and Langdon Winner looks critically at the "scientific enthusiasts of a posthuman future." Taken as a whole, the book provides a humanistic overview of a subject too often considered only in its technological aspect. (shrink)

Pragmatic approaches to genetic testing are discussed and appraised. Whilst there are various schools of pragmatism, the Deweyan appraoch seems to be the most appreciated in bioethics as it allows a historical approach indebted to Hegel. This in turn allows the pragmatist to specify and balance principles in various contexts. There are problems with where to draw a line between what is referred to here as the micro- and macro-level of doing bioethics, unless one is simply to be classified (...) as a principlist. Whilst most discussions on genetics occur at a macro level, most specifying must be done also at a micro level – the clinical encounter. Whilst pragmatism encourages us to understand better social and scientific factors and puts into perspective statements like ‘playing God’, doubts are raised about the ‘consensus’ process and how one can put aside fundamental values such as the moral status of the embryo on which there is general disagreement. If those doing pragmatism do not endorse these values, there seems to be little ground for process and compromise with those who do. It seems therefore that pragmatism cannot ignore values, even those which are not endorsed by everyone. (shrink)

Increased attention paid to inter-group genetic variability following completion of the Human Genome Project has provoked debate about race as a category of classification in biomedicine and as a biological phenomenon at the level of the genome. Philosophers of science favor a metaphysical approach relying on natural kind theorizing, the underlying assumptions of which structure the questions asked. Limitations arise the more metaphysically invested and less attuned to scientific practice these questions are. Other questions—arguably, those that matter most socially (...) and politically—remain unasked, not merely overlooked but systematically ignored and even foreclosed. Race fails as a postulated natural kind because it fails to meet expectations that as a category of classification it furnish an authoritative taxonomy that by depicting fundamental divisions in nature is conducive to fulfilling far-ranging explanatory aims. Racial, ethnic, and other group designations may nonetheless be projectible insofar as they support inductive inferences in biomedicine, but this does not render them any less social. Indeed, the statistical, contingent, accidental, localized, and interest-relative bases of such inferences serve to undercut the dichotomizing of race as either biological reality or social construct and favor the adoption of a pragmatic approach. (shrink)

Feminism offers three separate but equally important insights about human genetics and the new reproductive technologies. First, feminism is concerned with ways in which these new technologies have the potential to exploit women, particularly in the treatment of their reproductive tissue, while seeming to offer both sexes greater reproductive freedom. This risk has been largely ignored by much bioethics, which has concentrated on choice and autonomy at the expense of justice, giving it little to say about the concept of exploitation. (...) Second, feminist scholars have developed complex and subtle analyses of how women's labour is incorporated into the global bioeconomy in a gendered manner. Although feminist perspectives vary on such issues as surrogate motherhood, they have provided important studies of how women's labour is commodified in the new reproductive technologies. Finally, feminist analysts and activists have been among the leaders in identifying and resisting the threats from commodification and commercialisation in genetic research and patenting, which often affect women disproportionately. In all three areas, feminist writers have drawn specific attention to medical, economic and political impacts on women that had not been adequately considered. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Accurate Self-Assessment, Autonomous Ignorance, and the Appreciation of DisabilityJoel Anderson (bio) and Warren Lux (bio)In their thoughtful commentaries on our essay, "Knowing your own strength: Accurate self-assessment as a requirement for personal autonomy," George Agich, Ruth Chadwick, and Dominic Murphy (2004) provide both criticisms and insights that give us a context in which to clarify further our claim that one's autonomy is impaired when one is unable to (...) appreciate whether one has the capacities required for tasks one is undertaking. We focus on two issues: the extent to which our account of autonomy suggests a problematically "externalist" or "objective" approach and the issue of whether our talk of accurate self-assessment entails an overdemanding requirement that one know numerous facts about oneself to count as autonomous.The External Point of ViewFor many, the idea that specific regions of the brain might be relevant to a person's autonomy evokes nightmarish, startlingly reductionist visions of a world in which informed consent is decided on the basis of neuroimaging. In arguing that a capacity for self-assessment is essential for autonomy and also presupposes executive function that is often impaired by prefrontal damage, we do not wish to engage in such reductionism by suggesting that there is any straightforward, one-to-one mapping comparable to that presupposed by the nightmare scenarios. Given what we know about the brain's plasticity, the prospects (although limited at present) for neurorehabilitation, the multiplicity of the instantiation of autonomy-related capacities, and, especially, the constitutively moral/normative dimensions of these capacity concepts, such mappings are clearly problematic. This is true even in the easy cases, which, as Murphy points out, include our case of "John." This is all the more true with regard to the more complicated psychiatric cases, including disorders such as depression where the normative dimensions and the greater interpretive leeway in diagnosis preclude reductionist solutions (See Anderson 2004). For these reasons and for independent philosophical reasons, we are uncomfortable with the label "externalist," [End Page 309] although we acknowledge and confirm our view that externally applied neuroscientific notions—and evidence—can inform these matters. Nonetheless, we do not wish to argue for a fully externalist point of view, especially when paired with the idea that we are advocating a "smooth naturalistic picture of the cognitive basis of autonomy" (Murphy 2004, 303). Murphy puts us in some terrific company with the likes of John Doris, Shaun Nichols, and—we would add—himself, and this is welcome and flattering. But, to avoid any misunderstanding of an issue that we do not actually take up in our essay, we should caution that we do not endorse a program of naturalizing the normativity on which many of central autonomy-related concepts are based. The notion, for example, of what it is to assess competently one's chances of success cannot be replaced with a set of nomological regularities or a self-applying list of necessary and sufficient conditions.Appreciating Disability and Knowing the FactsOne of the central challenges we face in presenting our approach is to distinguish our requirement of "accurate self-assessment" from an implausible requirement that one have no false beliefs about one's capacities. In different ways, all three commentaries make it clear that our argument would benefit from further clarification of this distinction.In her commentary, Chadwick suggests that our approach may commit us to requiring too much self-knowledge, specifically, that it seems to require accurate knowledge of things like our genetic makeup as a requirement for autonomy. To begin with, it is worth underscoring again that the requirement we have introduced is explicitly task specific: we are focused here on whether an agent has an understanding of things that are relevant for undertaking an intended task, and declarative knowledge of facts, genetic or otherwise, about oneself is relevant only insofar as they bear on that understanding.But Chadwick's point clearly goes deeper. In that regard, it is particularly important to underscore that ours is actually a requirement that has less to do with knowing facts—even task-specific ones—about oneself and much more to do with having the ability to incorporate available... (shrink)

Evolution continually selects the best genes to proliferate the species. Emerging cosmetic plastic surgeries allow us to bypass our genetic code and cheat our naturally predetermined appearances by altering the perceived external flaws and ignoring the intact internal code where the “flaws” remain. Without these self-identified unwanted physical attributes, people who otherwise might not have been perceived as desirable mates for procreation allow themselves to be perceived as desirable enough to pass on their genes. TV shows are allowing us (...) to witness the advantages over evolution that can be gained with the right amount of time and money. What we see on the outside is not necessarily what we are going to get on the inside, genetically speaking. With more and more people flocking to cosmetic procedures at younger ages, doctors and consumers need to understand and discuss the importance of this dramatic misrepresentation to the opposite sex. While there is a right to undergo the procedures, those who do so prior to having children, and even those who do not, are faced with important affective choices within a number of different relationships that need to be considered for both now and the future. (shrink)

Lifelines mounts a vigorous attack on sociobiology on the utterly mistaken grounds that sociobiologists believe that genes single-handedly determine social behavior. The many previously published rebuttals to this pernicious criticism are conveniently ignored by the author.

Questions about information inform many debates in bioethics. One of the reasons for this is that at least some level of information is taken by many to be a prerequisite of valid consent. For others, autonomy in the widest sense presupposes information, because one cannot be in control of one’s life without at least some insight into what it could turn out to contain. Yet not everyone shares this view, and there is a debate about whether or not there is (...) a right to remain in ignorance of one’s medical, and especially genetic, information. It is notable, though, that this debate leaves unexamined the assumption that, if a person wants information, he is entitled to it. This paper examines the assumption, specifically in relation to genetics, where learning facts about oneself may reveal facts about other people, particularly one’s close relatives. This may be taken as a violation of their privacy, and since privacy is something that we normally think should be respected, it is worth asking whether one ought to abjure the opportunity to obtain genetic information for the sake of privacy. In effect, there may be an argument to be made not just for a right to remain in ignorance, but for a duty to do so. (shrink)

Genetics is a biomedical science that investigates heredity, variability, occurrence of genetic diseases and their prevention. Genetic science has many fields of science, which deal with different genetic processes, methods, aspects and fields of application. The genetic research in Europe related to the individual as the main subject of the research is exposed to a wide range of ethical and legal issues. From the developments in genetic science other sciences have evolved, thanks to which the (...) modern world is able to protect the genetic information of data, and to receive the sanction while ignoring the laws of such data. However, many problems still persist in the field of protection of personal genetic information, such as regulatory standards, the inviolability of an individual, the assurance of freedom and privacy of information. This manuscript attempts to reveal the main aspects of genetic human data protection, to research conduct regulations, ethics and issues related to the protection of individuals, such as protection of privacy, discrimination, confidentiality, etc. The article mainly focuses on the Conventions and Protocols elaborated by the Council of Europe because of its role in bioethics and focus on human rights. The author examined the documents such as the Convention on Human Rights and Biomedicine, the Additional Protocol to the Convention on Human Rights and Biomedicine concerning Biomedical Research, Directive 95/46/EC of the European Parliament and of the Council of 24 October 1995 on the protection of individuals with regard to the processing of personal data and on the free movement of such data and others. Genetic discrimination is strictly forbidden by international conventions and declarations, which means that discrimination on the grounds of personal genetic information (diseases, abnormalities) is not possible in all areas, including employment and insurance. However, individuals face some problems in getting a job due to the publicity and information disclosure to their employers, or in increasing the amount of insurance premiums. However, the disclosure of genetic information may have relevant, statutory consequences and the victims may apply to court for defending these rights. It is essential to protect genetic rights, as any form of discrimination against a person on the grounds of their genetic heritage is prohibited and intervention in the health field or disclosure of such information is only possible after the person concerned has given their free and informed consent. (shrink)

The main purpose of this paper is to draw attention to an important part of Habermas’ critique of genetic enhancement, which has been largely ignored in the discussion; namely his use of Kierkegaard’s reflections on the existential conditions for becoming one-self from Either/or and the Sickness unto Death. It will be argued that, although Habermas presents some valuable and highly significant perspectives on the effect of genetic enhancement on the individual’s self-understanding and ability to experience him- or herself (...) as a free and equal individual, he does not succeed in working out a consistent argument. The claim is that he fails to explain how the existential analysis is related to his reflections on the sociological and psychological impacts of genetic enhancement in the realm of communicative action. It is this lack of theoretical clarity, which seems to render Habermas vulnerable to some of the critique which has been raised against his theory from a number of different scientific disciplines and areas of research. Hence, the first part of the paper provides some examples of the nature and variety of this critique, the second part presents Habermas’ own critique of genetic enhancement in the context of a dispute between so-called ‘liberal’ and ‘conservative’ arguments, and finally, the third part discusses the limits and possibilities of his position in a future debate about genetic enhancement. (shrink)

Increased attention paid to inter-group genetic variability following completion of the Human Genome Project has provoked debate about race as a category of classification in biomedicine and as a biological phenomenon at the level of the genome. Philosophers of science favor a metaphysical approach relying on natural kind theorizing, the underlying assumptions of which structure the questions asked. Limitations arise the more metaphysically invested and less attuned to scientific practice these questions are. Other questions—arguably, those that matter most socially (...) and politically—remain unasked, not merely overlooked but systematically ignored and even foreclosed. Race fails as a postulated natural kind because it fails to meet expectations that as a category of classification it furnish an authoritative taxonomy that by depicting fundamental divisions in nature is conducive to fulfilling far-ranging explanatory aims. Racial, ethnic, and other group designations may nonetheless be projectible insofar as they support inductive inferences in biomedicine, but this does not render them any less social. Indeed, the statistical, contingent, accidental, localized, and interest-relative bases of such inferences serve to undercut the dichotomizing of race as either biological reality or social construct and favor the adoption of a pragmatic approach. (shrink)

Turning animals into art through genetic manipulation poses many questions for how we think about our relationship with other species. Here, I explore three rather disparate sets of issues. First, I ask to what extent the production of such living “artforms” really is as transgressive as advocates claim. Whether or not it counts as radical in terms of art I cannot say: but it is not at all radical, I argue, in terms of how we think about our human (...) place in the world. On the contrary, producing these animals only reinforces our own sense of our importance. The second theme I explore is the extent to which making transgenic organisms for any purposes is radical in terms of complexity. Here, I focus on the idea of complexity as a concept in developmental biology; genetic manipulation may be successful to commercial companies, but it is deeply troubling to many biologists who consider that its deeply entrenched reductionism is enormously problematic. What risks do we run by ignoring nature’s own complexity—and creativity? And—in particular—what risks do we run of damaging or compromising animal welfare? The third theme turns to public perceptions of these new technologies (whether in science or art), and notes the extent of public unease. This unease is not simply a question of public ignorance about the technology, but reflects the enormously rich ways in which we make meanings about animals, and relate to them. These are, I suggest, a far more potent source of creativity than simply moving genes around to make photogenic animals. (shrink)

John Harsanyi and John Rawls both used the veil of ignorance thought experiment to study the problem of choosing between alternative social arrangements. With his ‘impartial observer theorem’, Harsanyi tried to show that the veil of ignorance argument leads inevitably to utilitarianism, an argument criticized by Sen, Weymark and others. A quite different use of the veil-of-ignorance concept is found in evolutionary biology. In the cell-division process called meiosis, in which sexually reproducing organisms produce gametes, the chromosome (...) number is halved; when meiosis is fair, each gene has only a fifty percent chance of making it into any gamete. This creates a Mendelian veil of ignorance, which has the effect of aligning the interests of all the genes in an organism. This paper shows how Harsanyi's version of the veil-of-ignorance argument can shed light on Mendelian genetics. There turns out to be an intriguing biological analogue of the impartial observer theorem that is immune from the Sen/Weymark objections to Harsanyi's original. View HTML Send article to KindleTo send this article to your Kindle, first ensure [email protected] is added to your Approved Personal Document E-mail List under your Personal Document Settings on the Manage Your Content and Devices page of your Amazon account. Then enter the ‘name’ part of your Kindle email address below. Find out more about sending to your Kindle. Find out more about sending to your Kindle. Note you can select to send to either the @free.kindle.com or @kindle.com variations. ‘@free.kindle.com’ emails are free but can only be sent to your device when it is connected to wi-fi. ‘@kindle.com’ emails can be delivered even when you are not connected to wi-fi, but note that service fees apply. Find out more about the Kindle Personal Document Service.SOCIAL JUSTICE, GENOMIC JUSTICE AND THE VEIL OF IGNORANCE: HARSANYI MEETS MENDELVolume 28, Issue 1Samir Okasha DOI: https://doi.org/10.1017/S0266267112000119Your Kindle email address Please provide your Kindle [email protected]@kindle.com Available formats PDF Please select a format to send. By using this service, you agree that you will only keep articles for personal use, and will not openly distribute them via Dropbox, Google Drive or other file sharing services. Please confirm that you accept the terms of use. Cancel Send ×Send article to Dropbox To send this article to your Dropbox account, please select one or more formats and confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about sending content to Dropbox. SOCIAL JUSTICE, GENOMIC JUSTICE AND THE VEIL OF IGNORANCE: HARSANYI MEETS MENDELVolume 28, Issue 1Samir Okasha DOI: https://doi.org/10.1017/S0266267112000119Available formats PDF Please select a format to send. By using this service, you agree that you will only keep articles for personal use, and will not openly distribute them via Dropbox, Google Drive or other file sharing services. Please confirm that you accept the terms of use. Cancel Send ×Send article to Google Drive To send this article to your Google Drive account, please select one or more formats and confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about sending content to Google Drive. SOCIAL JUSTICE, GENOMIC JUSTICE AND THE VEIL OF IGNORANCE: HARSANYI MEETS MENDELVolume 28, Issue 1Samir Okasha DOI: https://doi.org/10.1017/S0266267112000119Available formats PDF Please select a format to send. By using this service, you agree that you will only keep articles for personal use, and will not openly distribute them via Dropbox, Google Drive or other file sharing services. Please confirm that you accept the terms of use. Cancel Send ×Export citation Request permission. (shrink)

Bioethics traditionally focuses on establishing moral limits between different types of acts. However, boundaries are established by communities and individuals who differ in the constraints shaping their moral world. Phase boundaries, the sites of transition between two physical phases such as a liquid and a gas, provide a metaphor for ‘drawing a line’ in bioethics discourse. Phase boundaries occur where the physical constraints allow both phases to coexist in stable equilibrium. This relationship can also be considered in reverse, using the (...) known position of the phase boundary to disclose the physical constraints. By analogy, instead of trying to locate the ‘correct’ moral boundary, the alternative perspective of ‘reverse ethics’ works from a commonly accepted boundary to examine the constraints of the moral world that are being used to establish it. Genetic interventions into the human body provide interesting examples of boundary establishment. In gene therapy, focusing on boundaries has resulted in a model of moral permissibility that ignores some alternative standpoints and increases the potential for conflict between them. Reverse ethics examines such conflicts in terms of the nature of the moral worlds that have come into contact with each other, taking seriously the diversity of factors governing the location of a boundary, in ways that might help shift some entrenched lines of conflict. (shrink)

How should families be constructed? Does it matter if we choose to ignore ‘blood ties’ and raise children without their genetic parents? The debate over a recent court ruling allowing single and lesbian women access to assisted reproductive technologies (ART’s) illustrates two possible answers to this question. Many of those opposed to the ruling argue that the traditional biological family is the natural family unit and the ideal family form, which should be preserved. Amongst those in favour it is (...) argued that families are not defined by nature but culturally constructed, that the traditional biological family is just one possible family form and that the way families are arranged is a matter of personal preference. This paper argues that questions about the importance of preserving the biological family rest largely on the value we attribute to genetic relatedness and not on whether the family is a natural or cultural construct. I argue against the claim that genetic relatedness and biological families are so important to children’s welfare that lesbian and single women should be denied access to ARTs. (shrink)