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)

Communicating genetic information to family members has been the subject of an extensive debate recently in bioethics and law. In this context, the extent of the relatives’ right to know and not to know is examined. The mainstream in the bioethical literature adopts a liberal perception of patient autonomy and offers a utilitarian mechanism for solving familial tensions over genetic information. This reflects a patient-centred approach in which disclosure without consent is justified only to prevent serious (...) harm or death to others. Based on a legal and bioethical analysis on the one hand, and an examination of empirical studies on the other, this paper advocates the adoption of a relational perception of autonomy, which, in the context of genetics, takes into account the effect that any decision—whether to disclose or not to disclose—will have on the familial relationship and the dynamics of the particular family. Adding this factor to the criteria usually advocated by lawyers and ethicists will facilitate reaching a sensitive decision, which recognises the various interests of family members beyond the risk to physical health. Taking this factor into account will require a process of deliberation both between doctors and patients, and in the family. It will also require a relaxation of medical confidentiality, as the family rather than the patient is gradually perceived as the unit of care. Moreover, adopting such a relational approach will accord with current views of doctors and patients who base their decision primarily on the nature of the familial relationship. (shrink)

The sequence of nucleotide bases occurring in an organism’s DNA is often regarded as a codescript for its construction. However, information in a DNA sequence can only be regarded as a codescript relative to an operational biochemical machine, which the information constrains in such a way as to direct the process of construction. In reality, any biochemical machine for which a DNA codescript is efficacious is itself produced through the mechanical interpretation of an identical or very similar codescript. (...) In these terms the origin of life can be described as a bootstrap process involving the simultaneous accumulation of genetic information and the generation of a machine that interprets it as instructions for its own construction. This problem is discussed within the theoretical frameworks of thermodynamics, informatics and self-reproducing automata, paying special attention to the physico-chemical origin of genetic coding and the conditions, both thermodynamic and informatic, that a system must fulfil in order for it to sustain semiosis. The origin of life is equated with biosemiosis. (shrink)

The use of genetic testing has prompted the question of whether insurance companies should be able to use predictive genetic test results (GTRs) in their risk classification of clients. While some jurisdictions have passed legislation to prohibit this practice, the UK has instead adopted a voluntary code of practice that merely restricts the ways in which insurance companies may use GTRs. Critics have invoked various theories of justice to argue that this approach is unfair. However, as well as (...) sometimes relying on somewhat idealised assumptions, these analyses have tended to invoke theories that have wide-ranging and highly revisionary implications for insurance. Moreover, they fail to adequately engage with a conception of justice that plausibly undergirds the status quo approach to insurance in the UK. I argue that it is a mistake to simply invoke a single contestable theory in seeking to develop sound policy on the use of GTRs in insurance. To that end, in this paper, I outline three plausible principles of justice that policy on this issue ought to balance: A principle of equity, a principle of equal access and a principle of need. In doing so, I shall offer a pluralist justice-based argument in support of the spirit, if not the precise letter, of the UK approach. (shrink)

Under conditions with a low level of available genetic information, mutualistic private insurance markets will often create broadly just outcomes, even if by accident rather than by design. Normatively acceptable outcomes of this kind would come under threat if insurers were to have increased access to genetic information with substantial predictive content.1 As the availability of relevant individual genetic information grows, mutualistic forms of market-based insurance face a dilemma between either sacrificing individuals’ interests in (...) genetic privacy, or creating conditions for market failure due to adverse selection. My view is therefore that we have good reason to shift towards more solidaristic forms of ‘risk-sharing institutions’ with regard to functions such as life insurance and critical illness insurance, as a way of resolving normative tensions between values of equality, privacy, non-discrimination and autonomy. Such a position, I have argued, does not depend on endorsing any particular conception of social justice, but can be defended on the basis of a number of different plausible accounts of what justice demands.1 Jonathan Pugh argues against my endorsement of a shift towards solidaristic, non-market risk-sharing institutions, and instead argues broadly in favour of the status quo. He holds that it counts against my proposals that they ‘have wide-ranging and highly revisionary implications’, and argues that my approach is mistaken in relying on ‘a single contestable theory’. Pugh offers a purportedly less contestable account of the relevant normative considerations underlying insurance regimes, composed of three …. (shrink)

A current trend in bioethics considers genetic information as family property. This paper uses a logical approach to critically examine Matthew Liao’s proposal on the familial nature of genetic information as grounds for the duty to share it with relatives and for breach of confidentiality by the geneticist. The authors expand on the topic by examining the relationship between the arguments of probability and the familial nature of genetic information, as well as the concept (...) of harm in the context of genetic risk. Lastly, they examine the concept of harm in relation to the type of situations w the potential recipient of the information is not the person directly affected by the risk. (shrink)

The question of whether “genetic information” is a merely causal factor in development or can be made sense of semantically, in a way analogous to a language or other type of representation, has generated a long debate in the philosophy of biology. It is intimately connected with another intense debate, concerning the limits of genetic determinism. In this paper I argue that widespread attempts to draw analogies between genetic information and information contained in books, (...) blueprints or computer programs, are fundamentally inadequate. In development, gene exons are the central part of an intricate and densely ramified semantic Genetic Informational Network. DNA in the entire genome is in a state of continuous positive and negative feedback with itself and with its ‘environment’, and is ‘read’ and acted upon by the cell in various alternative and complementary ways. The linear combinatorial coding relation between codons and amino acids is but one aspect of semantic genetic information, which is, when considered in its entirety, a far wider and richer concept. (shrink)

We will analyse the representations and conceptualisation of genetics and genetic information in bioethical discourse. Genetics and genetic information is widely believed to be revolutionizing medicine and is sometimes misconceived as having a high predictive value compared to traditional diagnostics. We will attempt to present the inherent limitations of genetic information within its health care context. We␣will also argue against the exceptional treatment of genetic information that seems to govern bioethical reflection and (...) regulatory approaches. And finally, we will make the claim that geneticization should be seen as a more serious threat to our privacy, autonomy and freedom, than genetic discrimination. (shrink)

RNA localization is a powerful strategy used by cells to localize proteins to subcellular domains and to control protein synthesis regionally. In germ cells, RNA targeting has profound implications for development, setting up polarities in genetic information that drive cell fate during embryogenesis. The frog oocyte offers a useful system for studying the mechanism of RNA localization. Here, we discuss critically the process of RNA localization during frog oogenesis. Three major pathways have been identified that are temporally and (...) spatially separated in oogenesis. Each pathway uses a different mechanism to effect RNA localization. In some cases, localization elements within the 3' untranslated region have been identified and have provided unique insights into the localization process. This important field is still in its infancy, however, and much remains to be learned. BioEssays 21:546–557, 1999. © 1999 John Wiley & Sons, Inc. (shrink)

RNA localization is a powerful strategy used by cells to localize proteins to subcellular domains and to control protein synthesis regionally. In germ cells, RNA targeting has profound implications for development, setting up polarities in genetic information that drive cell fate during embryogenesis. The frog oocyte offers a useful system for studying the mechanism of RNA localization. Here, we discuss critically the process of RNA localization during frog oogenesis. Three major pathways have been identified that are temporally and (...) spatially separated in oogenesis. Each pathway uses a different mechanism to effect RNA localization. In some cases, localization elements within the 3' untranslated region have been identified and have provided unique insights into the localization process. This important field is still in its infancy, however, and much remains to be learned. BioEssays 21:546–557, 1999. © 1999 John Wiley & Sons, Inc. (shrink)

We may create a catch-22 so that only people who are unlikely to need health insurance can afford it.... Genetic risk testing is important because it exposes the logic of a system that provides access to health insurance to those least likely to need it.

One of the most striking developments in recent biology has been the proliferation of concepts such as coding, information, representation and programming, especially applied to genes. The idea that genes can be described as having semantic properties, as well as ordinary causal properties, has become so uncontroversial in many quarters that it now appears prominently in biology textbooks. Scott Gilbert's widely used developmental biology text, to pick just one example, tell us that "the inherited information needed for development (...) and metabolism is encoded in the DNA sequences of the chromosomes" (Gilbert 1997 p. 5). (shrink)

John Maynard Smith has defended against philosophical criticism the view that developmental biology is the study of the expression of information encoded in the genes by natural selection. However, like other naturalistic concepts of information, this ‘teleosemantic’ information applies to many non-genetic factors in development. Maynard Smith also fails to show that developmental biology is concerned with teleosemantic information. Some other ways to support Maynard Smith’s conclusion are considered. It is argued that on any definition (...) of information the view that development is the expression of genetic information is misleading. Some reasons for the popularity of that view are suggested. (shrink)

Genetic information about one individual often has medical and reproductive implications for that individual’s relatives. There is a debate about whether policy on transmitting genetic information within the family should change to reflect this shared aspect of genetic information. Even if laws on medical confidentiality remain unchanged, there still remains the question of professional practice and whether, to what extent and by what means professionals should encourage disclosure within a family. The debate so far (...) has tended to focus on who has a right to genetic information, or has a right to decline genetic information, frequently drawing on the notion of individual autonomy. There are significant divergences within this debate, and difficulties with the use of autonomy in this context have been noted. This paper draws on theoretical considerations as well as on qualitative empirical data to show that shifting from talk of autonomy to talk of integrity will greatly enrich and illuminate the issues. It becomes possible to gain deeper insights into the ethical significance of the timing and the manner of such communication, the character of recipients of knowledge, and the nuanced nature of communication and different levels of understanding within a family. (shrink)

In the paper ‘Genetic information, insurance, and a pluralistic approach to justice’, Jonathan Pugh1 develops an argument from unresolved pluralism in our theories of justice, via the pluralism this occasions in relation to the specific question of the use of genetic test results in insurance underwriting, to the conclusion that the UK regulatory approach in relation to the use of GTRs in insurance is broadly correct.1 Pugh’s argument is wide-ranging and I cannot provide a complete critique of (...) it in this short comment, but I will gesture towards some strands of the argument that are potentially problematic. The first potential problem in the argument is that Pugh bases his argument on a very extensive range of accounts of justice, including pure maximising consequentialism, strict egalitarianism and libertarianism, among many others. If these are all accounts of justice, it is not strange that there is pluralism of conclusions in relation to a specific question of justice or discrimination, such as the use of GTRs in the underwriting of specific kinds of insurance contracts. Pugh’s range, for instance, includes accounts of justice that deny the direct importance of distributive concerns as well as accounts that see distributive concerns as crucial. These accounts disagree not only about the answer to Pugh’s question but also about …. (shrink)

The concept of genetic information is controversial because it attributes semantic properties to what seem to be ordinary biochemical entities. I argue that nucleic acids contain information in a semantic sense, but only about a limited range of effects. In contrast to other recent proposals, however, I analyze genetic information not in terms of a naturalized account of biological functions, but instead in terms of the way in which molecules determine their products during processes known (...) as template-directed syntheses. I argue that determining an outcome in a certain way is constitutive for being an instruction. On this account, the content of genetic information is identified with the template's properties, which determine the product in the way constitutive for instructions. (shrink)

Biobanks hold out the prospect of significant public and private benefit, as genetic information contained in tissue samples is mined for information. However, the storing of human tissue samples and genetic information for research and/or therapeutic purposes raises a number of serious privacy and autonomy concerns. These concerns are compounded when one considers the possibility that a biobank or its owner might go bankrupt. Insolvency impairs the ability of enforcement regimes, and liability-based regimes in particular, (...) to enforce legal norms. The goal of this essay is to develop guideposts for thinking about private and public enforcement of privacy imposed by donors on tissue samples and/or genetic information when a biobank becomes insolvent. (shrink)

Within the medical, legal and bioethical literature, there has been an increasing concern that the information derived from genetic tests may be used to unfairly discriminate against individuals seeking various kinds of insurance; particularly health and life insurance. Consumer groups, the general public and those with genetic conditions have also expressed these concerns, specifically in the context of life insurance. While it is true that all insurance companies may have an interest in the information obtained from (...) genetic tests, life insurers potentially have a very strong incentive to (want to) use genetic information to rate applicants, as individuals generally purchase their own cover and may want to take out very large policies. This paper critically focuses on genetic information in the context of life insurance. We consider whether genetic information differs in any relevant way from other kinds of non-genetic information required by and disclosed to life insurance companies by potential clients. We will argue that genetic information should not be treated any differently from other types of health information already collected from those wishing to purchase life insurance cover. (shrink)

In this article I argue that the proper subjects of intangible property claims include medical records, genetic profiles, and gene enhancement techniques. Coupled with a right to privacy these intangible property rights allow individuals a zone of control that will, in most cases, justifiably exclude governmental or societal invasions into private domains. I argue that the threshold for overriding privacy rights and intangible property rights is higher, in relation to genetic enhancement techniques and sensitive personal information, than (...) is commonly suggested. Once the bar is raised, so‐to‐speak, the burden of overriding it is formidable. Thus many policy decisions that have been recently proposed or enacted – citywide audio and video surveillance, law enforcement DNA sweeps, genetic profiling, national bans on genetic testing and enhancement of humans, to name a few – will have to be backed by very strong arguments. (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)

Rights, autonomy, privacy, and confidentialityare concepts commonly used in discussionsconcerning genetic information. When theseconcepts are thought of as denoting absolutenorms and values which cannot be overriden byother considerations, conflicts among themnaturally occur.In this paper, these and related notions areexamined in terms of the duties and obligationsmedical professionals and their clients canhave regarding genetic knowledge. It issuggested that while the prevailing idea ofautonomy is unhelpful in the analysis of theseduties, and the ensuing rights, an alternativereading of personal self-determination (...) canprovide a firmer basis for ethical guidelinesand policies in this field. (shrink)

People are worried that advances in genetics will lead to a revival of eugenics. Such worries are often associated with eugenic practices carried out early in the 20th century---the forcible sterilization of feebleminded persons in the United States and the Nazi program of Racial Hygiene. A "new eugenics" involving prenatal genetic testing and the selective abortion of fetuses diagnosed with severe genetic disorders might, nonetheless, be acceptable. In chapter one I examine the history of eugenics and discuss what (...) might make a new eugenics more tolerable. ;Chapters two and three discuss reproductive decision making by individuals . Chapter 2 investigates the morality of abortion. I conclude that the moral status of the fetus is ultimately uncertain. In exceptional circumstances, such as the case where a fetus would develop into a severely disabled infant, there are good reasons for thinking that abortion is morally permissible. It is plausible, for example, that the value of a fetal life is a function of its future quality of life. ;In chapter three I discuss what quality of life consists in. I develop a pluralistic perspective according to which quality of life is a function of multiple independent components. When deciding to bring a child into existence parents should consider the quality of life expected for the child and also take into account the likely impact on their own lives, the lives of other family members, and society as a whole. ;Chapter four asks whether or not governmental restrictions should be placed on the kinds of genetic interventions which will be permitted. A worry is that interventions aimed at enhancement would only be available to the financially fortunate and thus promote unjust social inequalities. Another worry is that the development and use of such interventions would drain medical resources away from more fruitful purposes and thus have a negative impact on aggregate utility. The social aim to promote liberty, on the other hand, speaks against the imposition of restrictions. Faced with conflicting social values, we need to think more about how to make trade-offs between liberty, equality, and aggregate utility. (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)

The debate continues about whether people have a duty to pass on the positive results of their genetic tests to relatives who are at risk from the same disease, and, should they refuse, whether physicians and genetic counselors then have the duty to do so. To date, the role and views of nurses in this debate have not been investigated. In our study, a sample of Israeli nurses, untrained in genetics, were asked for their theoretical opinions and what (...) practical steps they would take in the case of patients' refusal to disclose. The nurses were very sure that patients should inform their families but were equally sure that nurses must respect their decision to disclose or not. Few said they would take practical steps to disclose information if the patient objected. The authors believe that the most useful and appropriate role for nurses in this field is in working to bring about co-operation between patients and family members. (shrink)

In the history of genetics, the information-theoretical description of the gene, beginning in the early 1960s, had a significant effect on the concept of the gene. Information is a highly complex metaphor which is applicable in view of the description of substances, processes, and spatio-temporal organisation. Thus, information can be understood as a functional particle of many different language games (some of them belonging to subdisciplines of genetics, as the biochemical language game, some of them belonging to (...) linguistics and informatics). It is this wide covering of different language games that justifies the common description of genes x, y, z as containing information for the phenotypic traits X, Y, Z (or the genome as storage for the information of a whole organism). However, if information is taken as the explanans and phenotypic traits or organisms as the explananda, then a description of the explanandum is of prior importance before the explanans can be characterised. This way of thinking could be useful for future discussions on the strikingly dominant information -metaphor, and the different gene concepts as well. The article illustrates this in two steps. First, a condensed overview on the history of genetics is given, which can be divided into three parts: (1) genetics without genes, (2) genetics with genes, but without information, (3) genetics with genes and information. It is assumed that this provides not only some historical knowledge about the origin of genetics and the introduction of technical terms, but offers at least preliminary insight into the methodological structure of genetic descriptions. In a second step, we redraw Spemann’s disturbation experiments to discuss our thesis that genetic information is not a natural entity, but part of a causality-language game which is secondarily added to the descriptions of interventionalistic practices, viz. experimental approaches. (shrink)

Recent ethical and legal challenges have arisen concerning the rights of individuals over their IVF embryos, leading to questions about how, when the wishes of parents regarding their embryos conflict, such situations ought to be resolved. A notion commonly invoked in relation to frozen embryo disputes is that of reproductive rights: a right to have (or not to have) children. This has sometimes been interpreted to mean a right to have, or not to have, one's own genetic children. But (...) can such rights legitimately be asserted to give rise to claims over embryos? We examine the question of property in genetic material as applied to gametes and embryos, and whether rights over genetic information extend to grant control over IVF embryos. In particular we consider the purported right not to have one's own genetically related children from a property-based perspective. We argue that even if we concede that such (property) rights do exist, those rights become limited in scope and application upon engaging in reproduction. We want to show that once an IVF embryo is created for the purpose of reproduction, any right not to have genetically-related children that may be based in property rights over genetic information is ceded. There is thus no right to prevent one's IVF embryos from being brought to birth on the basis of a right to avoid having one's own genetic children. Although there may be reproductive rights over gametes and embryos, these are not grounded in genetic information. (shrink)

IntroductionIDIS is a multidisciplinary journal with a focus on identity in the information society. The information society is usually associated with information and communication technologies, such as computers, mobile phones and the Internet, and with information in the form of computer- or human-readable data. In this special issue on genetics, information and identity, however, we focus on a different type of information, namely genetic information. The DNA of the human genome is often (...) called a ‘blueprint’ of human life, containing information that regulates—in various and very complex ways—most of the processes in human life. In this sense, genetics may well be considered an information technology in its own right.Genetic information is becoming ever more important in society, although current knowledge of the human genome and how the genome relates to human life is still limited. Nevertheless, what knowledge we have about the genetic make-up of people—whether in terms of congen .. (shrink)

Computing plays an important role in genetics (and vice versa).Theoretically, computing provides a conceptual model for thefunction and malfunction of our genetic machinery. Practically,contemporary computers and robots equipped with advancedalgorithms make the revelation of the complete human genomeimminent – computers are about to reveal our genetic soulsfor the first time. Ethically, computers help protect privacyby restricting access in sophisticated ways to genetic information.But the inexorable fact that computers will increasingly collect,analyze, and disseminate abundant amounts of (...) class='Hi'>genetic informationmade available through the genetic revolution, not to mentionthat inexpensive computing devices will make genetic informationgathering easier, underscores the need for strong and immediateprivacy legislation. (shrink)

In the last 25 years writing in bioethics, particularly in medical ethics, has generally claimed that action is ethically acceptable only if it receives informed consent from those affected. However, informed consent provides only limited justification, and may provide even less as new information technologies are used to store and handle personal data, including personal genetic data. The central philosophical weakness of relying on informed consent procedures for ethical justification is that consent is a propositional attitude, so referentially (...) opaque: consent is given to specific propositions describing limited aspects of a situation, and does not transfer even to closely related propositions. Assembling genetic data in databases creates additional difficulties for ethical justification. This is not because genetic information is intrinsically exceptional, but because the merger of genetic and information technologies make it possible to assemble massive quantities of complex information that defeat individuals' best efforts to grasp what is at stake, or to give or withhold informed consent. The future agenda for bioethics will need to take account of both these limitations of appeals to informed consent. (shrink)

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)

Purpose The purpose of this paper is to inform or alert readers to the extensive use and ready availability of genetic information that poses varying degrees of social and legal danger. The eugenics movement of the 1920s and the general acceptance of genetic essentialism provide context for considering contemporary examples of the problem. Design/methodology/approach This paper takes an argumentative approach, supporting proposals with ideas from historical and current research literature. Findings The limits of data protection, extensive use (...) of direct-to-consumer genetic testing and use of genetic information in white nationalist circles portend a resurgence of eugenic beliefs from a century ago. Social implications Research-based recommendations may help to avoid extreme consequences by encouraging people to make informed decisions about the use of genetic information. Originality/value The paper counterposes contemporary understanding of genetic testing and data accessibility with the much older ideology of eugenics, leading to concerns about how white nationalists might further their aims with 21st century technology. (shrink)

Deciding to undergo a predictive genetic test is difficult. The patient has no symptoms that might tip the balance in favor of the test, and knowledge of the information might have significant implications for her physical and mental health, her family, and her financial position. Furthermore, although the decision to undergo many medical tests might reasonably be said to be the patient's own business, it could be argued that predictive genetic tests are different. Dean Bell and Belinda (...) Bennett argue that genetic information has a “shared” or “familial” character due to the likelihood of it affecting others. If others might be affected by the results of your test, then it is certainly plausible to suggest that they have an interest in knowing the information. If that is the case, then it could also be argued that they are entitled to be considered when you are deciding whether to undergo a test. (shrink)

This volume maps the areas of ethical concern in the debate regarding the governance of genetic information, and suggests alternative ethical frameworks and models of regulation in order to inform its restructuring. Genetic governance is at the heart of medical and scientific developments, and is connected to global exploitation, issues of commodification, commercialisation and ownership, the concepts of property and intellectual property and concerns about individual and communal identity. Thus the decisions that are made in the next (...) few years about appropriate models of genetic governance will have knock-on effects for other areas of governance. In short the final answer to 'Who Decides?' in the context of genetic governance will fundamentally shape the ethical constructs of individuals and their networks and relationships in the public sphere. (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)

This paper explores the analogy between food label information and genetic information, in order to defend the right not to know judgmental nutritional information, such as the one conveyed by traffic light labels and other, more aggressive, recent proposals. Traffic light labeling judges the nutritional quality of food by means of colored flags on the front pack . It involves a simplification of the link between food quality and health outcomes. Unlike GDAs ,1 it does not (...) present the consumer with neutral nutritional information, but conveys an interpretation of the link between nutritional qualities and .. (shrink)

The background of this paper is the ongoing dismantling of the social insurance systems in favour of commercialisation and privatisation of insurances needed for illness, old age and premature death. This combined with the increased possibility of using genetic testing for differentiating personal insurance premiums has the potentiality of creating a ‘genetic proletariat’ — an uninsurable high-risk population. The common way of handling this problem in Sweden, and many other developed countries around the North Atlantic, has been to (...) regulate insurance companies’ right to ask for and use genetic information in various ways. There is a distinction between partial regulation (that allows insurance companies access to genetic information from genetic tests already made, sometimes only above a specified amount, but not to demand new tests) and total regulation (that forbids insurance companies to ask for or use any genetic information). I will argue that these forms of regulation probably will have adverse consequences given the dismantling of collective social insurance systems. If this is convincing, a better way to solve the problem of an uninsurable high-risk population (and other problems) is to resurrect the collective, obligatory insurance systems in which the individual risk profile does not constitute a basis for premium determination. Both arguments cast in terms of consequences and justice render support for this conclusion. (shrink)

Purpose Human genomic research demands very large pools of data to generate meaningful inference. Yet, the sharing of one’s genetic data for research is a voluntary act. The collection of data sufficient to fuel rapid advancement is contingent on individuals’ willingness to share. Privacy risks associated with sharing this unique and intensely personal data are significant. Genetic data are an unambiguous identifier. Public linkage of donor to their genetic data could reveal predisposition to diseases, behaviors, paternity, heredity, (...) intelligence, etc. The purpose of this paper is to understand individuals’ willingness to volunteer their private information in this high-risk/high-reward context. Design/methodology/approach The authors collect survey data from 273 respondents and use structural equation modeling techniques to analyze responses. Findings The authors find statistical support for our theorization. They find that while heightened awareness of the benefits and risks of sharing correlates with increased privacy concerns, the net impact is an increase in intention to share. Social implications The findings suggest that prescriptive awareness might be an effective tool with which policy-makers can gain the sufficient voluntary participation from individuals necessary to drive large-scale medical research. Originality/value This study contributes a theoretically and empirically informed model which demonstrates the impact of awareness and privacy concern on individuals’ willingness to share their genetic data for large-scale HGR. It helps inform a rising class of data sufficiency problems related to large-scale medical research. (shrink)

In his left-libertarian theory of justice Hillel Steiner introduces the idea of conceiving our germ-line genetic information as a natural resource as a means to achieving luck-egalitarian equality. This idea is very interesting in and of itself. But it also has the potential of turning Steiner’s theory into a particularly powerful version of left-libertarianism, or so I argue in the first part of this paper. In the second part I critically examine this idea. I show why, in contrast (...) to what Steiner claims, this idea requires us to evaluate not only the pieces of GLGI that we have used, but rather all the pieces of GLGI that our bodies deliver throughout our lives. Then I argue that besides the immense technical difficulties involved in meeting this requirement, which we may overcome in the future, there is also a substantive reason why we cannot meet this requirement. The relevant value of any given piece of GLGI depends on the way it would interact with another piece of GLGI of the opposite sex in a reproductive process. But there is no way of determining which pieces of GLGI should be assigned to each other for the purpose of this evaluation. (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)

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)

Prenatal genetic testing is becoming available for an increasingly broad set of diseases, and it is only a matter of time before parents can choose to test for hundreds, if not thousands, of genetic conditions in their fetuses. Should access to certain kinds of fetal genetic information be limited, and if so, on what basis? We evaluate a range of considerations including reproductive autonomy, parental rights, disability rights, and the rights and interests of the fetus as (...) a potential future child. We conclude that parents should be able to access information that could be useful during pregnancy, but that testing for non-medical information should be limited. Next, we argue that the government lacks a compelling state interest in regulating prenatal genetic testing and propose that regulation should occur through medical professional organizations. Finally, we present a framework for determining what testing physicians should recommend, offer neutrally, or not offer at all. (shrink)

Increasing emphasis on genetic research means that growing numbers of human research projects in Australia will involve complex issues related to genetic privacy, familial information and genetic epidemiology. The Office of Population Health Genomics (Department of Health, Western Australia) hosted an interactive workshop to explore the ethical issues involved in the disclosure of genetic information, where researchers and members of human research ethics committees (HRECs) were asked to consider several case studies from an ethical (...) perspective. Workshop participants used a variety of approaches to examine the complex ethical issues encountered, but did not consistently refer to the values and principles outlined in the National Statement on Ethical Conduct in Human Research (NHMRC 2007) or apply rational ethical approaches. Overall, the data suggested that both researchers and HREC members may benefit from further education and support regarding the application of ethical frameworks to the issues encountered in genetic research. (shrink)

The framework presented by Bayefsky and Berkman is based on having clear and accurate genetic information to offer parents, for them to either decide to prepare for birth or to terminate the...