Obtaining and sharing genetic information when there is a potential conflict of interest between patients and their relatives give rise to two questions. Do we have a duty to find out our genetic predispositions for disease for the sake of our relatives, or do we have a right to remain ignorant? Do we have a duty to disclose our known genetic predispositions for disease to our relatives? I argue that the answer to both questions is yes, but to a lesser (...) extent than sometimes claimed. (shrink)

Misattributed paternity or ‘false’ paternity is when a man is wrongly thought, by himself and possibly by others, to be the biological father of a child. Nowadays, because of the progression of genetics and genomics the possibility of finding misattributed paternity during familial genetic testing has increased. In contrast to other medical information, which pertains primarily to individuals, information obtained by genetic testing and/or pedigree analysis necessarily has implications for other biologically related members in the family. Disclosing or not a (...) misattributed paternity has a number of different biological and social consequences for the people involved. Such an issue presents important ethical and deontological challenges. The debate centres on whether or not to inform the family and, particularly, whom in the family, about the possibility that misattributed paternity might be discovered incidentally, and whether or not it is the duty of the healthcare professional to disclose the results and to whom. In this paper, we consider the different perspectives and reported problems, and analyse their cultural, ethical and legal dimensions. We compare the position of HCPs from an Italian and British point of view, particularly their role in genetic counselling. We discuss whether the Oviedo Convention of the Council of Europe can be seen as a basis for enriching the debate. (shrink)

With a growing number of genetic tests becoming available to the health and consumer markets, genetic health care providers in Canada are faced with the challenge of developing robust decision rules or guidelines to allocate a finite number of public resources. The objective of this study was to gain Canadian genetic health providers' perspectives on factors and criteria that influence and shape resource allocation decisions for publically funded predictive genetic testing in Canada. The authors conducted semi-structured interviews with 16 senior (...) lab directors and clinicians at publically funded Canadian predictive genetic testing facilities. Participants were drawn from British Columbia, Alberta, Manitoba, Ontario, Quebec and Nova Scotia. Given the community sampled was identified as being relatively small and challenging to access, purposive sampling coupled with snowball sampling methodologies were utilized. Surveyed lab directors and clinicians indicated that predictive genetic tests were funded provincially by one of two predominant funding models, but they themselves played a significant role in how these funds were allocated for specific tests and services. They also rated and identified several factors that influenced allocation decisions and patients' decisions regarding testing. Lastly, participants provided recommendations regarding changes to existing allocation models and showed support for a national evaluation process for predictive testing. Our findings suggest that largely local and relatively ad hoc decision making processes are being made in relation to resource allocations for predictive genetic tests and that a more coordinated and, potentially, national approach to allocation decisions in this context may be appropriate. (shrink)

Using data obtained during a retrospective interview study of 30 women who had undergone genetic testing—BRCA1/2 mutation searching—this paper describes how women, previously diagnosed with breast/ovarian cancer, perceive their role in generating genetic information about themselves and their families. It observes that when describing their motivations for undergoing DNA testing and their experiences of disclosing genetic information within the family these women provide care based ethical justifications for their actions. Finally, it argues that generating genetic information and disclosing this information (...) to kin raise different types of ethical issues. The implications of these findings for ethical debates about informed choice in the context of genetic testing are discussed. (shrink)

This text is about obtaining and sharing genetic information when there is a potential conflict of interests between patients and their families and relatives. The patient or, in this text, the “index-person,” is someone who is considering obtaining or already has obtained genetic information about herself through genetic testing.The index-person can have several reasons to take an interest in obtaining her genetic information. She may want to know if she has a genetic predisposition for a disorder in order to take (...) measures for preventing its development. Even if there are no preventive measures, as is the case with Huntington's disease, for instance, she may still want to know whether she has the mutation, in order to adjust her future plans. These interests that an individual may have in obtaining genetic information have been used to argue in favour of a right to know. (shrink)

Since its origins in the mid-1980s, DNA profiling has become the most powerful tool for identification in contemporary society. Practitioners have deployed it to determine parentage, verify claims to identity in various civil contexts, identify bodies in wars and mass disasters, and infer the identity of individuals who have left biological traces at crime scenes. Thus DNA profiling can be used to implicate or exonerate individuals from participation in particular social relations and activities; this affords it a growing importance in (...) major social institutions such as the family, the criminal justice system, immigration services, and health services. There are key state, security, civil liberty, personal, and commercial considerations surrounding the reliability and social implications of DNA profiling in establishing the identities of “family members,” “claimants,” “customers,” “suspects,” and “citizens.”Given that DNA profiling is increasingly influential in forensic inquiries, the recently-developed practice in the UK of “familial searching” of DNA databases has the potential to become a significant aspect of investigations. (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)

This article explores the socio-ethical concerns raised by the familial searching of forensic databases in criminal investigations, from the perspective of family and kinship studies. It discusses the broader implications of this expanded understanding for wider debates about identity, privacy and genetic databases.