title: Different concepts and models of information for family-relevant genetic findings: comparison and ethical analysis.
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.
authors.affiliation: Institute for the History, Theory and Ethics of Medicine, Ulm University, Frauensteige 6, 89075, Ulm, Germany, christian.lenk@uni-ulm.de.
authors.forename: Christian
authors.initials: C
authors.lastname: Lenk
authors.forename: Debora
authors.initials: D
authors.lastname: Frommeld
mesh_terms: D022126:Access to Information / Q000941:ethics*; D003219:Confidentiality / Q000941:ethics*; D030881:Disclosure / Q000941:ethics*; D005192:Family Health / Q000941:ethics*; D005817:Genetic Counseling / Q000941:ethics*; D020022:Genetic Predisposition to Disease / Q000235:genetics*; D005820:Genetic Testing / Q000941:ethics*; D006801:Humans; D008957:Models, Genetic; D026684:Personal Autonomy