Communicating genetic information to family members has been the subject of an extensive debate recently in bioethics and law. In this context, the extent of the relatives’ right to know and not to know is examined. The mainstream in the bioethical literature adopts a liberal perception of patient autonomy and offers a utilitarian mechanism for solving familial tensions over genetic information. This reflects a patient-centred approach in which disclosure without consent is justified only to prevent serious harm or death to others. Based on a legal and bioethical analysis on the one hand, and an examination of empirical studies on the other, this paper advocates the adoption of a relational perception of autonomy, which, in the context of genetics, takes into account the effect that any decision—whether to disclose or not to disclose—will have on the familial relationship and the dynamics of the particular family. Adding this factor to the criteria usually advocated by lawyers and ethicists will facilitate reaching a sensitive decision, which recognises the various interests of family members beyond the risk to physical health. Taking this factor into account will require a process of deliberation both between doctors and patients, and in the family. It will also require a relaxation of medical confidentiality, as the family rather than the patient is gradually perceived as the unit of care. Moreover, adopting such a relational approach will accord with current views of doctors and patients who base their decision primarily on the nature of the familial relationship.
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↵i For a comprehensive and detailed analysis of current empirical studies on patients’ and doctors’ views about breach of confidentiality, see Gilbar,1 chapter 5.
↵ii Models that promote equal access to genetic information exist. Whether they compromise the individual’s right to confidentiality and privacy is beyond the scope of this study. In any event, implementing these models requires significant changes in the structure of the healthcare system and its allocation of resources. For such a model, see Doukas and Berg.4
↵iii See Harper,21 chapter 1. Notably, there are various formats of genetic counselling, such as: (1) mutation testing on one individual, which suggests that his or her relatives carry the same mutation; (2) mutation testing for the purpose of enabling healthcare professionals to provide risk assessment to relatives; and (3) providing a clinical diagnosis or risk assessment to the individual patient, which clarifies the risk assessment given to the relatives. These various settings of genetic counselling have different implications for the family.
↵iv See box 3 in Parker et al26. The authors raise several ethical questions in this context.
Competing interests: None declared.
Competing interests: None declared.
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