„Wir kriegen eben halt kein krankes Kind mehr.“ ‚Reproduktionsverantwortung‘ im Umgang mit der Vererbung von Cystischer Fibrose

Hoeltje, Bettina; Liebsch, Katharina

doi:10.1007/978-3-658-09651-9_5

Cited by 2 publications

(6 citation statements)

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“…By affected we mean that they wanted to undergo or had already undergone GT for themselves to learn about their genetic conditions and/or were seeking information about the genetic risks of their (unborn) children. Some studies reflected explicitly how GI has sparked a new form of "being affected" 6 , for instance by detecting carriers for recessive genetic disorders (Reed, 2009;Atkin et al, 2015;Hoeltje and Liebsch, 2015).…”

Section: Categories Of Gr Studiesmentioning

confidence: 99%

“…As Hoeltje and Liebsch (2015) argued in their German interview study with those affected in the context of CF, this "new" paradigm of GR stands in contrast to classical eugenics as an imperative for those affected to self-determinedly "select" and understand their decision as an individual choice [cf. also Habermas (2005)].…”

Section: Reproductive Gr (B4)mentioning

confidence: 99%

“…The decisions and actions described were more negative-selective (e.g., deciding for abortion or for relinquishment) than positiveselective (e.g., actively choosing one's children's genetic make-up). Some studies examined explicitly how these private decisions by the parents were influenced indirectly by public discourse and not-as in the case of classic eugenics-explicitly enforced by state authorities (Boardman, 2014b;Yau and Zayts, 2014;Hoeltje and Liebsch, 2015). Another group of studies focused on the role of "experienced knowledge" of the illness within the family and how this influenced reproductive decisions.…”

Section: Reproductive Gr (B4)mentioning

confidence: 99%

“…The studies in the field of reproductive GR fell into two subcategories: studies focusing on the process of making a decision about having a child if the risk of having a baby with a genetic disease was considerable (n = 7) (Downing, 2005;Dekeuwer and Bateman, 2013;Donnelly et al, 2013;Boardman, 2014a,b;Yau and Zayts, 2014;Hoeltje and Liebsch, 2015) and studies using gender as a category to investigate the role of future parents in the context of prenatal genetic screening procedures (n = 3) (van Berkel and Klinge, 1997;Reed, 2009;Atkin et al, 2015). In addition, one study approached reproductive GR indirectly via the perceptions and opinions of genetic counselors (Ekberg, 2007).…”

Section: Reproductive Gr (B4)mentioning

confidence: 99%

“…Similar to the context of disclosing genetic risk in the family, some studies focused on a rational/principle-oriented approach to responsibility (n = 6, code B4a) (Ekberg, 2007;Dekeuwer and Bateman, 2013;Donnelly et al, 2013;Boardman, 2014a,b;Yau and Zayts, 2014) and some on an affective/relational approach (n = 5, code B4b) (van Berkel and Klinge, 1997;Downing, 2005;Reed, 2009;Atkin et al, 2015;Hoeltje and Liebsch, 2015).…”

Section: Reproductive Gr (B4)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: Categories Of Gr Studiesmentioning

confidence: 99%

Section: Reproductive Gr (B4)mentioning

confidence: 99%