Maximizing the benefits and minimizing the risks associated with prenatal genetic testing

Ekberg, Merryn E

doi:10.1080/13698570601181573

Cited by 12 publications

(18 citation statements)

References 32 publications

(31 reference statements)

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“…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: Reproductive Gr (B4)mentioning

confidence: 99%

“…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%

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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“…These include : the risk of state intervention into private lives and the consequent loss in reproductive freedom; the risk of coercive testing emerging from medical paternalism; the risk of ambivalence in knowing whether prenatal testing should be offered for all conditions, or only for severe medical conditions; the risk prenatal testing will amplify existing racial, sexual and disability discrimination... [emphasis added]. 24 …”

Section: Resultsmentioning

confidence: 99%

Bioethics Methods in the Ethical, Legal, and Social Implications of the Human Genome Project Literature

Walker

Morrissey

2013

Bioethics

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While bioethics as a field has concerned itself with methodological issues since the early years, there has been no systematic examination of how ethics is incorporated into research on the Ethical, Legal and Social Implications (ELSI) of the Human Genome Project. Yet ELSI research may bear a particular burden of investigating and substantiating its methods given public funding, an explicitly cross-disciplinary approach, and the perceived significance of adequate responsiveness to advances in genomics. We undertook a qualitative content analysis of a sample of ELSI publications appearing between 2003-2008 with the aim of better understanding the methods, aims, and approaches to ethics that ELSI researchers employ. We found that the aims of ethics within ELSI are largely prescriptive and address multiple groups. We also found that the bioethics methods used in the ELSI literature are both diverse between publications and multiple within publications, but are usually not themselves discussed or employed as suggested by bioethics method proponents. Ethics in ELSI is also sometimes undistinguished from related inquiries (such as social, legal, or political investigations).

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“…So, for example, “these benefits [of prenatal genetic testing] are, however, tempered by a series of complex ethical, legal and social risks … These include: the risk of state intervention into private lives and the consequent loss in reproductive freedom; the risk of coercive testing emerging from medical paternalism; the risk of ambivalence in knowing whether prenatal testing should be offered for all conditions …” (ref. 5, p. 67).…”

Section: Resultsmentioning

confidence: 99%

Charting ELSI’s future course: lessons from the recent past

Walker

Morrissey

2012

Genetics in Medicine

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Purpose We sought to examine the ethical, legal, and social implications (ELSI) literature research and scholarship types, topics, and contributing community fields of training as a first step to charting the broader ELSI community’s future priorities and goals. Methods We categorized 642 articles and book chapters meeting inclusion criteria for content in both human genetics or genomics and ethics or ELSI during a 5-year period (2003–2008) according to research and scholarship types, topics, and the area of advanced training of the first-listed author. Research and scholarship type categories were developed and characterized through in-depth review of 95 randomly sampled publications from the larger group. Results There is a single dominant approach to ELSI, which focuses on ethical and other social issues “downstream” of advances in genomics, the contributors to which predominately have advanced training in medicine or science fields other than social science. A comparatively low percentage of publications primarily offer policy recommendations, and these are much more likely to be written by those with advanced training in law than is the case for the literature as a whole. Social science studies predominately employ qualitative methods and vary significantly with respect to the extent and types of recommendations offered. Two further types of ELSI research and scholarship offer alternative models for so-called “normative” work in this field. Conclusion Considering topics, training, and types of ELSI research and scholarship from the most recent past allows for a baseline perspective that is sorely needed in charting this field’s future course.

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Maximizing the benefits and minimizing the risks associated with prenatal genetic testing

Cited by 12 publications

References 32 publications

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

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

Bioethics Methods in the Ethical, Legal, and Social Implications of the Human Genome Project Literature

Charting ELSI’s future course: lessons from the recent past

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