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)

There is extensive discussion of the ethical, social, economic and political issues associated with the use of technologies based on DNA techniques. Many of these debates are premised on the assumption that DNA, and the genetic information that may be derived from it, have unique features which raise new social and ethical issues. In this paper it is argued that several of the features associated with DNA which are sometimes regarded as unique are shared with other biological materials. Others owe (...) more to the cultural image of DNA and some of the metaphors used to discuss it in biology and in wider debates than to the biological properties of DNA. The paper discusses the concepts of genetic material and genetic information and the social construction of DNA in relation to forensic DNA databases, paternity testing and genetic testing for disease. The paper concludes by suggesting that there are seven areas where issues related to DNA and genetic information are at least relatively distinct. (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)

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)

The article discusses the relationship between the notion of a moral right to personal self‐determination, the notion of a moral right to know and the notion of a moral right not to know. In particular, the author asks under what conditions, if any, the right to self‐determination implies a right to have information or a right not to have information. The conclusions he defends are theoretical in character rather than concrete norms and directions, and they are intended to be relevant (...) in many contexts, not only in the context of information concerning, say, medical decisions. Yet the author restates the question concerning the right to have and especially the right not to have genetic knowledge about one's own genes on the basis of a right to self‐determination. He argues that a right (not) to have genetic information can be defended on the ground of a right to self‐determination, but that this kind of defense presupposes several normative, and controversial, arguments. (shrink)

The article discusses the relationship between the notion of a moral right to personal self‐determination, the notion of a moral right to know and the notion of a moral right not to know. In particular, the author asks under what conditions, if any, the right to self‐determination implies a right to have information or a right not to have information. The conclusions he defends are theoretical in character rather than concrete norms and directions, and they are intended to be relevant (...) in many contexts, not only in the context of information concerning, say, medical decisions. Yet the author restates the question concerning the right to have and especially the right not to have genetic knowledge about one's own genes on the basis of a right to self‐determination. He argues that a right (not) to have genetic information can be defended on the ground of a right to self‐determination, but that this kind of defense presupposes several normative, and controversial, arguments. (shrink)

The Convention for the Protection of Human Rights and Dignity of the Human Being with Regard to the Application of Biology and Medicine is now one of the most important bioethics texts from the point of view of international policy and law. It is the result of five years of discussions and negotiations between the different instances of the Council of Europe. In this article I analyze several problems. First, there are problems of articulation between the Convention and the joint (...) Explanatory Report. The oriented exegesis of the Explanatory Report raises suspicion about the Convention, which appears as a smooth façade for an instrument actually serving ideological positions many people do not share. Second, there are problems of formulation within the Convention. These are mainly problems with articles that state prohibitions without any distinction, relativization, contextualization or sense of evolution. Finally, there are problems of substance, leading to the conclusion that the Convention is not a good illustration of the human rights philosophical tradition in the name of which it has been proclaimed. This tradition is the one of Enlightenment. And when Kant summarizes the motto of Enlightenment, the injunction is "Sapere Aude!": "Dare to know!" It is difficult to hear such a message through the Convention, and the Explanatory Report includes too many passages and sentences that mean the opposite. (shrink)

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 (...) shielded frominformation about the self must compete onequal terms with claims based in the rights andinterests of others. In balancing the weightand importance of rival considerations aboutgiving or withholding information, if rightsclaims have any place, rights are more likelyto be defensible on the side of honestcommunication of information rather than indefence of ignorance. The right to free speechand the right to decline to acceptresponsibility to take decisions for othersimposed by those others seem to us moreplausible candidates for fully fledged rightsin this field than any purported right toignorance. Finally, and most importantly, ifthe right to autonomy is invoked, a properunderstanding of the distinction between claimsto liberty and claims to autonomy show that theprinciple of autonomy, as it is understood incontemporary social ethics and English law,supports the giving rather than the withholdingof information in most circumstances. (shrink)