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)

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)

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)

This article describes and introduces a new innovative tool for bioethics education: a rock opera on the ethics of genetics written by two academics and a drummer legend. The origin of the idea, the characters and their development, and the themes and approaches as well as initial responses to the music and the show are described, and the various educational usages are explored.