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Genomic information and a person's right not to know: A closer look at variations in hypothetical informational preferences in a German sample.
Flatau, Laura; Reitt, Markus; Duttge, Gunnar; Lenk, Christian; Zoll, Barbara; Poser, Wolfgang; Weber, Alexandra; Heilbronner, Urs; Rietschel, Marcella; Strohmaier, Jana; Kesberg, Rebekka; Nagel, Jonas; Schulze, Thomas G.
Afiliación
  • Flatau L; Institute of Psychiatric Phenomics and Genomics, Ludwig-Maximilians-University, Munich, Germany.
  • Reitt M; Institute of Psychiatry and Psychotherapy, University of Göttingen, Göttingen, Germany.
  • Duttge G; Center for Medical Law, University of Göttingen, Göttingen, Germany.
  • Lenk C; Institute for History, Theory and Ethics of Medicine, Ulm University, Ulm, Germany.
  • Zoll B; Institute for Human Genetics, University of Göttingen, Göttingen, Germany.
  • Poser W; Institute of Psychiatry and Psychotherapy, University of Göttingen, Göttingen, Germany.
  • Weber A; Center for Medical Law, University of Göttingen, Göttingen, Germany.
  • Heilbronner U; Institute of Psychiatric Phenomics and Genomics, Ludwig-Maximilians-University, Munich, Germany.
  • Rietschel M; Central Institute for Mental Health, Mannheim, Germany.
  • Strohmaier J; Central Institute for Mental Health, Mannheim, Germany.
  • Kesberg R; Institute for Psychology and Education, Ulm University, Ulm, Germany.
  • Nagel J; Department of Psychology, University of Göttingen, Göttingen, Germany.
  • Schulze TG; Institute of Psychiatric Phenomics and Genomics, Ludwig-Maximilians-University, Munich, Germany.
PLoS One ; 13(6): e0198249, 2018.
Article en En | MEDLINE | ID: mdl-29924808
In clinical practice and in research, there is an ongoing debate on how to return incidental and secondary findings of genetic tests to patients and research participants. Previous investigations have found that most of the people most of the time are in favor of full disclosure of results. Yet, the option to reject disclosure, based on the so-called right not to know, can be valuable especially for some vulnerable subgroups of recipients. In the present study we investigated variations in informational preferences in the context of genetic testing in a large and diverse German sample. This survey examined health care professionals, patients, participants of genetic counseling sessions and members of the general population (N = 518). Survey participants were assessed regarding their openness to learning about findings under various hypothetical scenarios, as well as their attitudes about the doctor-patient-relationship in a disclosure situation and about informational transfer to third parties. While the majority of participants wanted to learn about their findings, the extent of support of disclosure varied with features of the hypothetical diagnostic scenarios (e.g., controllability of disease; abstract vs. concrete scenario description) and demographic characteristics of the subjects. For example, subjects with higher levels of education were more selective with regards to the kind of information they want to receive than those with lower levels of education. We discuss implications of these findings for the debate about the right not to know and for the clinical practice of informed consent procedures.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Genoma Humano / Pruebas Genéticas / Revelación / Privacidad Genética / Asesoramiento Genético / Consentimiento Informado Tipo de estudio: Prognostic_studies Aspecto: Patient_preference Límite: Adolescent / Adult / Aged / Female / Humans / Male / Middle aged País/Región como asunto: Europa Idioma: En Revista: PLoS One Asunto de la revista: CIENCIA / MEDICINA Año: 2018 Tipo del documento: Article País de afiliación: Alemania Pais de publicación: Estados Unidos
Texto completo
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Genoma Humano / Pruebas Genéticas / Revelación / Privacidad Genética / Asesoramiento Genético / Consentimiento Informado Tipo de estudio: Prognostic_studies Aspecto: Patient_preference Límite: Adolescent / Adult / Aged / Female / Humans / Male / Middle aged País/Región como asunto: Europa Idioma: En Revista: PLoS One Asunto de la revista: CIENCIA / MEDICINA Año: 2018 Tipo del documento: Article País de afiliación: Alemania Pais de publicación: Estados Unidos