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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 (...) |
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There is a common view in medical ethics that the patient's right to be informed entails, as well, a correlative right not to be informed, i.e., to waive one's right to information. This paper argues, from a consideration of the concept of autonomy as the foundation for rights, that there can be no such ‘right’ to refuse relevant information, and that the claims for such a right are inconsistent with both deontological and utilitarian ethics. Further, the right to be informed (...) |
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Clinical geneticists are increasingly confronted with ethical tensions between their responsibilities to individual patients and to other family members. This paper considers the ethical implications of a “familial” conception of the clinical genetics role. It argues that dogmatic adherence to either the familial or to the individualistic conception of clinical genetics has the potential to lead to significant harms and to fail to take important obligations seriously.Geneticists are likely to continue to be required to make moral judgments in the resolution (...) |
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Understanding of the human genome and its functional significance has increased exponentially since the completion of the Human Genome Project in 2003. The HGP fueled the discovery of more than 1,800 disease genes and paved the way for researchers to identify and test for genes suspected of causing inherited diseases. Currently, there are more than 1000 genetic tests for human diseases and conditions on the market. These tests can play an integral role in the delivery of health care by providing (...) |
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Understanding of the human genome and its functional significance has increased exponentially since the completion of the Human Genome Project in 2003. The HGP fueled the discovery of more than 1,800 disease genes and paved the way for researchers to identify and test for genes suspected of causing inherited diseases. Currently, there are more than 1000 genetic tests for human diseases and conditions on the market. These tests can play an integral role in the delivery of health care by providing (...) |
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Understanding of the human genome and its functional significance has increased exponentially since the completion of the Human Genome Project in 2003. The HGP fueled the discovery of more than 1,800 disease genes and paved the way for researchers to identify and test for genes suspected of causing inherited diseases. Currently, there are more than 1000 genetic tests for human diseases and conditions on the market. These tests can play an integral role in the delivery of health care by providing (...) |
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A number of prominent bioethicists such as Mike Parker, Anneke Lucassen, and Bartha Maria Knoppers have called for the adoption of a system in which by default, genetic information is shared among family members. In this paper, I suggest that a main reason given in support of this call to share genetic information among family members is the idea that genetic information is essentially familial in nature. Upon examining this ‘familial nature of genetics’ argument, I show that most genetic information (...) |
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The non-identity problem arises when an intervention or behavior changes the identity of those affected. Delaying pregnancy is an example of such a behavior. The problem is whether and in what ways such changes in identity affect moral considerations. While a great deal has been written about the non-identity problem, relatively little has been written about the implications for physicians and how they should understand their duties. We argue that the non-identity problem can make a crucial moral difference in some (...) |
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Knowledge is generally a good thing. People who know lots of bits of information are generally admired. Some of them win prizes in TV competitions. If you were offered the gift of having an entire encyclopedia wired into your brain, you would probably accept, without thinking. But we should be wary of assuming that all knowledge is good. Too much knowledge can inhibit rather than enable thought. |
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People have a powerful interest in geneticprivacy and its associated claim to ignorance,and some equally powerful desires to beshielded from disturbing information are oftenvoiced. We argue, however, that there is nosuch thing as a right to remain in ignorance,where a right is understood as an entitlementthat trumps competing claims. This doesnot of course mean that information must alwaysbe forced upon unwilling recipients, only thatthere is no prima facie entitlement to beprotected from true or honest information aboutoneself. Any claims to be (...) |
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The physician-patient relationship has changed over the last several decades, requiring a systematic reevaluation of the competing demands of patients, physicians, and families. In the era of genetic testing, using a model of patient care known as the family covenant may prove effective in accounting for these demands. The family covenant articulates the roles of the physician, patient, and the family prior to genetic testing, as the participants consensually define them. The initial agreement defines the boundaries of autonomy and benefit (...) |
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The physician-patient relationship has changed over the last several decades, requiring a systematic reevaluation of the competing demands of patients, physicians, and families. In the era of genetic testing, using a model of patient care known as the family covenant may prove effective in accounting for these demands. The family covenant articulates the roles of the physician, patient, and the family prior to genetic testing, as the participants consensually define them. The initial agreement defines the boundaries of autonomy and benefit (...) |
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The right not to know is underappreciated in policy-making. Despite its articulation in medical law and ethics, policy-makers too easily let other concerns override the right not to know. This observation is triggered by a recent decision of the Dutch government on embryo selection for Huntington’s disease. This is a monogenetic debilitating disease without cure, leading to death in early middle age, and thus is a likely candidate for preimplantation genetic diagnosis. People possibly affected with the Huntington gene do not (...) |
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