Making Responsible Life Plans: Cultural Differences in Lay Attitudes in Germany and Israel Towards Predictive Genetic Testing for Late-Onset Diseases

Raz, Aviad E.; Schicktanz, Silke

doi:10.1007/978-3-319-32733-4_5

Cited by 1 publication

(3 citation statements)

References 18 publications

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“…Similar considerations were also raised by Raz et al (2014) in an Israeli-German study, who framed their responsibilities toward their future children as motivation for having a genetic test: "lt was common amongst Israeli respondents, but not German respondents, to speak about their motivation for taking the HD test in the context of their children, as one Israeli respondent summarised it: '[Taking the test] is my responsibility as a mother'" [Raz et al (2014), p. 187].…”

Section: Gr Of At-risk People In the Context Of The Family (B)supporting

confidence: 68%

“…This question of responsible conduct was, however, addressed from various points of view. The underlying social relationship was approached in different ways: some studies, for instance, looked at these ethical conflicts from a gender perspective (Hallowell, 1999;d' Agincourt-Canning, 2001Foster et al, 2002;Hallowell et al, 2002Hallowell et al, , 2006Forrest et al, 2003;Rowley, 2007), whereas others focused on intercultural differences (Raz and Schicktanz, 2009;Shaw and Hurst, 2009;Raz et al, 2014) or on specific familial relationships, such as that between parents and their underaged children (Steinberg et al, 2007;Arribas-Ayllon et al, 2008b).…”

Section: Shared Assumptions On Gr In the Literature Corpusmentioning

confidence: 99%

“…From an intercultural perspective, few studies reported differences in the responsibilities perceived between different Western societies (Raz and Schicktanz, 2009;Raz et al, 2014). While Miller et al (2014) observed an acknowledgment of the importance of disclosing genetic risk information in interviews with Westerners about genomic sequencing for late-stage cancer care, disclosing GI to the wider family was perceived as less morally important in some groups with a non-western cultural background.…”

Section: Decision Making and Disclosure Intertwined (B3)mentioning

confidence: 99%

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The Concept of “Genetic Responsibility” and Its Meanings: A Systematic Review of Qualitative Medical Sociology Literature

Leefmann

Schaper²,

Schicktanz³

2017

Front. Sociol.

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The acquisition of genetic information (GI) confronts both the affected individuals and healthcare providers with difficult, ambivalent decisions. Genetic responsibility (GR) has become a key concept in both ethical and socioempirical literature addressing how and by whom decision-making with respect to the morality of GI is approached. However, despite its prominence, the precise meaning of the concept of GR remains vague. Therefore, we conducted a systematic literature review on the usage of the concept of GR in qualitative, socioempirical studies, to identify the main interpretations and to provide conceptual clarification. The review identified 75 studies with primarily an Anglo-American setting. The studies focused on several agents: the individual, the family, the parent, the healthcare professional, and the institution and refer to the concept of GR on the basis of either a rational/principle-oriented approach or an affective/relational approach. A subtype of the rational/principle-oriented approach is the reactive approach. The review shows how the concept of GR is useful for analyzing and theorizing about socioempirical findings within qualitative socioempirical studies and also reveals conceptual deficits in terms of insufficient theoretical accuracy and heterogeneity, and in the rarity of reflection on cultural variance. The vagueness and multiplicity of meanings for GR in socioempirical studies can be avoided by more normative-theoretical explication of the underlying premises. This would provide a higher degree of differentiation of empirical findings. Thereby, the complex findings associated with the individual and social implications of genetic testing in empirical studies can be better addressed from a theoretical point of view and can subsequently have a stronger impact on normative and policy debates.

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Section: Gr Of At-risk People In the Context Of The Family (B)supporting

confidence: 68%