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)

The emerging international biomedical law tends to recognise the right not to know one’s genetic status. However, the basis and conditions for the exercise of this right remain unclear in domestic laws. In addition to this, such a right has been criticised at the theoretical level as being in contradiction with patient’s autonomy, with doctors’ duty to inform patients, and with solidarity with family members. This happens especially when non-disclosure poses a risk of serious harm to the patient’s relatives who, (...) without that vital information, could be deprived of preventive or therapeutic measures. This paper argues, firstly, that individuals may have a legitimate interest in not knowing their genetic make up to avoid serious psychological consequences; secondly, that this interest, far from being contrary to autonomy, may constitute an enhancement of autonomy; thirdly, that the right not to know cannot be presumed, but must be “activated” by the individual’s explicit choice, and fourthly, that this is not an absolute right, in the sense that it may be restricted when disclosure to the patient is necessary in order to avoid a risk of serious harm to third persons. (shrink)

Background: Increasing use of genetic technologies in clinical and research settings increases the potential for misattributed paternity to be identified. Yet existing guidance from the President's Commission for the Study of Ethical Problems in Biomedical and Behavioral Research and the Institute of Medicine (among others) offers contradictory advice. Genetic health professionals are thus likely to vary in their practice when misattributed paternity is identified, and empirical investigation into the disclosure of misattributed paternity is scarce. Given the relevance of this ethical (...) dilemma and its significance to users of genetic services, this study aimed to investigate the attitudes of lay people with regard to the disclosure of misattributed paternity. Methods: An online questionnaire was hosted and advertised through Amazon's Mechanical Turk to 200 United States residents aged 18 years or older. Respondents were asked to rate (via a Likert scale) the ethical permissibility of possible actions a clinician may carry out when misattributed paternity is identified. Data analysis consisted of preliminary descriptive analysis, chi-squared analysis, and Wilcoxon signed-rank tests. Results: There was no clear majority support for many of the options surveyed across different contexts, with only six out of ten scenarios displaying some general consensus. Men were more likely to support scenarios where the father is informed of paternity. Importantly, participants' views varied according to whether the desires of the father were previously expressed, suggesting that perceptions of the permissibility of a clinician's action will depend on the interests of all parties affected. Conclusions: This sample of the general public showed attitudes that were, at least to some degree, at variance with some professional guidelines. We give arguments for why at least some of these attitudes might be justified. We argue that case-specific judgments should be made and outline some of the relevant ethical considerations. While general guidelines ought to be considered, context-specific moral judgments cannot be avoided. (shrink)

This article argues for the importance of conceptual clarity in the debate about the so-called right not to know. This is vital both at the theoretical and the practical level. It is suggested that, unlike many formulations and attempts to give effect to this right, what is at stake is not merely an aspect of personal autonomy and therefore cannot and should not be reduced only to a question of individual choice. Rather, it is argued that the core interests that (...) can be protected by the right not to know are better conceived of as privacy interests rather than autonomy interests. This not only helps us to understand what is in play but also informs regulatory, professional, and legal responses to handling information and taking decisions about whether or not to disclose information to persons about themselves. The practical implications of this conceptualization are explored in the context of feedback policies in health-related research. (shrink)

The right not to know is a contested matter. This can be because the inversion of the normal framing of entitlement to information about one's own health is thought to be illogical and inconsistent with self-authorship and/or because the very idea of claiming a right not to know information is an inappropriate appeal to the discourse of rights that places impossible responsibilities on others. Notwithstanding, there has been a sustained increase in this kind of appeal in recent years fueled in (...) large part by the rise and rise of the importance of personal autonomy in health care ethics, and by domestic and international health law. The right not to know has been acknowledged in at least two important international legal instruments. For example, the UNESCO Universal Declaration on the Human Genome and Human Rights, Article 5c provides: “The right of every individual to decide whether or not to be informed of the results of genetic examination and the resulting consequences should be respected.”. (shrink)

Background: Genomic analysis may reveal both primary and secondary findings with direct relevance to the health of probands’ biological relatives. Researchers question their obligations to return findings not only to participants but also to family members. Given the social value of privacy protection, should researchers offer a proband’s results to family members, including after the proband’s death? Methods: Preferences were elicited using interviews and a survey. Respondents included probands from two pancreatic cancer research resources, plus biological and nonbiological family members. (...) Hypothetical scenarios based on actual research findings from the two cancer research resources were presented; participants were asked return of results preferences and justifications. Interview transcripts were coded and analyzed; survey data were analyzed descriptively. Results: Fifty-one individuals (17 probands, 21 biological relatives, 13 spouses/partners) were interviewed. Subsequently, a mailed survey was returned by 464 probands, 1,040 biological family members, and 399 spouses/partners. This analysis highlights the interviews, augmented by survey findings. Probands and family members attribute great predictive power and lifesaving potential to genomic information. A majority hold that a proband’s genomic results relevant to family members’ health ought to be offered. While informants endorse each individual’s choice whether to learn results, most express a strong moral responsibility to know and to share, particularly with the younger generation. Most have few concerns about sharing genetic information within the family; rather, their concerns focus on the health consequences of not sharing. Conclusions: Although additional studies in diverse populations are needed, policies governing return of genomic results should consider how families understand genomic data, how they value confidentiality within the family, and whether they endorse an ethics of sharing. A focus on respect for individual privacy—without attention to how the broad social and cultural context shapes preferences within families—cannot be the sole foundation of policy. (shrink)

Dr Andorno and I have corresponded for some time on the question of a right not to know information. I enjoyed reading his paper and I am struck by the degree of agreement that we share. We both agree—for example, that unsolicited knowledge can be a burden which can significantly compromise an individual’s psychological integrity. We both share a desire to respect individual self determination. Also we each consider it reasonable for individuals to choose not to receive potentially harmful information. (...) I have already made these arguments, and more, elsewhere,1 but my starting point has not been autonomy, as advocated by Andorno, but rather privacy. In essence, my argument is that individuals enjoy, and are entitled to enjoy, a measure of psychological privacy which can be invaded by unwarranted disclosures of information.The reason that I prefer privacy to autonomy is not because I have any wish to “deny people the right to self determination”2 but rather because I perceive deficiencies in the autonomy model. Indeed, my approach and that of Andorno are not mutually exclusive; it is simply that my approach is broader and encompasses some of the harder cases which an autonomy based approach cannot help us to resolve. Thus, most of the substance of Andorno’s approach is subsumed within my model. I have—for example, no disagreement whatsoever with the view that if you have an indication that an individual would not wish to know then this wish should be respected. One might even establish novel means of discerning individuals’ wishes by establishing a register to record advance refusals, as Andorno …. (shrink)