Bioethics for Genomic Medicine: Responsibility to Family or Responsibility for Disclosure
https://doi.org/10.17803/2313-5395.2022.1.19.119-138
Abstract
Disclosure of patients’ genetic information to their families is a central bioethical topic in genomic medicine. The issue of disclosure to family is often associated with a balance between patients’ autonomy and confidentiality and beneficence of their relatives. Communicating patients’ genetic risk profiles back to their family members gives them an opportunity to benefit from additional testing, screening and prevention of potential disorder, so that bioethicists have offered a several models of communication with families. There is no unified definition of the term “family” in bioethics or health law, although the concept of “family” has an important position in the history of private law. There are many ambiguities about such issues as “What does ‘family’ mean?”, “How can communication about genetic risks be placed in a framework of family responsibilities?”. The analysis of several cases in genomic medicine carried out in the article allows us to delve into ethical, administrative, and legal details of these issues in genomic medicine. Notions of “disclosure to family,” “intrafamilial disclosure,” “family dynamics” and “the best interests of the child” are discussed in the article in this regard. Various models of disclosure are grounded in different concepts of family and family relations. If we consider the health professional’s duty to warn of risks to be the duty to help family members with exercising their autonomy, the health professional is responsible to family and is not responsible for consequences of disclosure. The notion of relational autonomy (based on recognition of mutual obligations of family members) begins to be discussed in law and bioethics, however, it still lacks the ethical underpinning. The further research could be aimed at developing the ethical concept of dependency in family relations.
Keywords
bioethics,
relational autonomy,
confidence,
genetic counselling,
genetic information,
disclosure to family,
familial information,
family dynamics,
collective agent,
family decision-making
Supporting agencies: Supported by the Russian Ministry of Science and Higher Education (Topic: Legal Regulation of Accelerated Development of Genetic Technologies: Research and Methodology Framework; No 730000Ф.99.1.БВ16АА02001).
About the Author
S. Yu. Shevchenko
Institute of Philosophy, Russian Academy of Sciences
Russian Federation
Russian Federation
Sergei Yu. Shevchenko, Cand. Sci. (Philosophy), Researcher, Department of Humanitarian Expertise and Bioethics
12/1 Goncharnaya ulitsa, Moscow 109240
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Review
For citations:
Shevchenko S.Yu. Bioethics for Genomic Medicine: Responsibility to Family or Responsibility for Disclosure. Kutafin Law Review. 2022;9(1):119-138. https://doi.org/10.17803/2313-5395.2022.1.19.119-138
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