Der Drittbezug prädiktiver Gendiagnostik im Spannungsfeld der Grundrechte auf Wissen, Nichtwissen und Geheimhaltung: Krankheitsveranlagungen im Familienverbund und das neue Gendiagnostikgesetz - 10.1628/000389113X13686086917974 - Mohr Siebeck
Rechtswissenschaft

Ferdinand Wollenschläger

Der Drittbezug prädiktiver Gendiagnostik im Spannungsfeld der Grundrechte auf Wissen, Nichtwissen und Geheimhaltung: Krankheitsveranlagungen im Familienverbund und das neue Gendiagnostikgesetz

Jahrgang 138 () / Heft 2, S. 161-203 (43)

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Predictive genetic tests identifying predispositions to diseases are more and more applied in medical practice (»$ 1,000 Genome«), but raise many legal questions. In particular, generating information not only about the person tested, but also about her/his relatives, predictive genetic tests transcend the bipolar physician-patient relationship. Hence, the rights of both, i.e. of the person tested and her/his relatives, to know, not to know and to keep secret one's genetic predisposition have to be balanced. The recent German Genetic Diagnosis Act ["Gendiagnostikgesetz (GenDG)"], which entered into force on 1 February 2010, has addressed this issue (cf. § 10 para 3 s. 4 and § 11 para 3 GenDG). The German legislator has, and, considering the important interest at stake, rightly so, refrained from limiting the right to test one's genetic predisposition in order to avoid possibly generating information also about one's relatives. Moreover, given the possible negative consequences of knowing predispositions to unavoidable and/or non-treatable diseases, it is convincing not to oblige the person tested to transmit such test results to her/his relatives. Conversely, the chance to avoid harm justifies to favour the right to know over the right not to know and thus to oblige the responsible medical person to recommend to the person tested that the latter recommends to her/his relatives to seek genetic counseling if a predisposition to avoidable and/or treatable diseases also concerning the relatives has been discovered (§ 10 para 3 s. 4 GenDG). It has to be noted, though, that the German legislator has accorded a (too) great weight to the interest of the person tested to keep secret the test results: It prevails even if a predisposition to a life-threatening, but curable disease has been discovered which also concerns her/his relatives. Even in this case the medical person must not inform the latter (§ 11 para 3 GenDG). The introductory example gives evidence of possible consequences. This solution, however, does not balance the interests at stake in a constitutional manner. Even if it is supported by some voices in legal literature and corresponds to the Austrian legislation, the high rank of life and physical integrity call for an exemption from the confidentiality of medical information according to the rules of state of necessity, as provided for in the Swiss legislation.
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Ferdinand Wollenschläger ist Inhaber des Lehrstuhls für Öffentliches Recht, Europarecht und Öffentliches Wirtschaftsrecht an der Juristischen Fakultät der Universität Augsburg.