Abstract
Genetic predispositions often concern not only individual persons, but also other family members. Advances in the development of genetic tests lead to a growing number of genetic diagnoses in medical practice and to an increasing importance of genetic counseling. In the present article, a number of ethical foundations and preconditions for this issue are discussed. Four different models for the handling of genetic information are presented and analyzed including a discussion of practical implications. The different models’ ranges of content reach from a strictly autonomous position over self-governed arrangements in the practice of genetic counseling up to the involvement of official bodies and committees. The different models show a number of elements which seem to be very useful for the handling of genetic data in families from an ethical perspective. In contrast, the limitations of the standard medical attempt regarding confidentiality and personal autonomy in the context of genetic information in the family are described. Finally, recommendations for further ethical research and the development of genetic counseling in families are given.
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Notes
The reference to John Stuart Mill can also be found in the works of other authors, analysing the problem of genetic knowledge in the family; cp. Boddington et al. 446: „An examination of the literature shows that value issues concerning genetic knowledge are typically framed in terms of rights to access, or refuse, certain information, and answers often draw heavily on notions of autonomy, variously conceived. Of particular interest to our argument here is that, in this debate, a notion of autonomy that is broadly based on the ideas of John Stuart Mill, where the value of individual choice regardless of content, is stressed, has been pitched against a broadly Kantian notion that foregrounds rationality as the wellspring of autonomy (Rhodes 1998; Takala and Häyry 2000).”
Conference of the project „Normatives Fundament und anwendungspraktische Geltungskraft des sog. Rechts auf Nichtwissen“[Normative foundations and practical implications of the ‚right not to know’], Institute for Human Genetics, University of Göttingen, Nov. 2013.
Cf. also Sect. (5.6.2), Where consent to release information has been refused, where a number of preconditions are named: “Before breaching any confidence in circumstances in which the patient/consultand has refused consent to release relevant information, a practitioner should generally: (a) attempt to obtain consent to disclosure from the patient in question, (b) have discussed the case with experienced professional colleagues, (c) tell the patient that they intend to breach this confidence and why, (d) keep any disclosure to that which is strictly necessary for the communication of risk, (e) document discussions with the reasons for disclosure without consent.”
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This publication was supported under Grant Number 01GP1205 by the German Ministry for Education and Research.
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Lenk, C., Frommeld, D. Different concepts and models of information for family-relevant genetic findings: comparison and ethical analysis. Med Health Care and Philos 18, 393–408 (2015). https://doi.org/10.1007/s11019-015-9638-5
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DOI: https://doi.org/10.1007/s11019-015-9638-5