Medicine, Health Care and Philosophy 12 (4):433-442 (2009)
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Abstract |
The professional and institutional responsibility for handling genetic knowledge is well discussed; less attention has been paid to how lay people and particularly people who are affected by genetic diseases perceive and frame such responsibilities. In this exploratory study we qualitatively examine the attitudes of lay people, patients and relatives of patients in Germany and Israel towards genetic testing. These attitudes are further examined in the national context of Germany and Israel, which represent opposite regulatory approaches and bioethical debates concerning genetic testing. Three major themes of responsibility emerged from the inter-group and cross-cultural comparison: self-responsibility, responsibility for kin, and responsibility of society towards its members. National contrast was apparent in the moral reasoning of lay respondents concerning, for example, the right not to know versus the duty to know (self-responsibility) and the moral conflict concerning informing kin versus the moral duty to inform (responsibility for kin). Attitudes of respondents affected by genetic diseases were, however, rather similar in both countries. We conclude by discussing how moral discourses of responsibility are embedded within cultural (national, religious) as well as phenomenological (being affected) narratives, and the role of public engagement in bioethical discourse
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Keywords | Genetic responsibility Being affected Public moralities Cross-cultural bioethics Germany Israel |
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DOI | 10.1007/s11019-009-9215-x |
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Citations of this work BETA
Exploring the Positions of German and Israeli Patient Organizations in the Bioethical Context of End-of-Life Policies.Aviad Raz, Isabella Jordan & Silke Schicktanz - 2014 - Health Care Analysis 22 (2):143-159.
“What the Patient Wants…”: Lay Attitudes Towards End-of-Life Decisions in Germany and Israel.Julia Inthorn, Silke Schicktanz, Nitzan Rimon-Zarfaty & Aviad Raz - 2015 - Medicine, Health Care and Philosophy 18 (3):329-340.
Patient Representation and Advocacy for Alzheimer Disease in Germany and Israel.Silke Schicktanz, Nitzan Rimon-Zarfaty, Aviad Raz & Karin Jongsma - 2018 - Journal of Bioethical Inquiry 15 (3):369-380.
Attitudes of Physicians and Patients Towards Disclosure of Genetic Information to Spouse and First-Degree Relatives: A Case Study From Turkey.Aslihan Akpinar & Nermin Ersoy - 2014 - BMC Medical Ethics 15 (1):39.
The Concept of “Genetic Responsibility” and Its Meanings: A Systematic Review of Qualitative Medical Sociology Literature.Jon Leefmann, Manuel Schaper & Silke Schicktanz - 2017 - Frontiers in Sociology 18 (1):1-22.
View all 8 citations / Add more citations
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