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Maximising the benefits and minimizing the risks associated with pre-natal genetic testing

Ekberg, M. E. (2007) Maximising the benefits and minimizing the risks associated with pre-natal genetic testing. Health, Risk and Society. 9(1), pp. 67-81. 1369-8575.

Item Type: Article
Abstract: With over 500 prenatal genetic tests currently available, and many more entering the consumer medical market each year, prenatal genetic testing is rapidly becoming routine practice in the medical management of pregnancy. The greatest benefits gained from prenatal genetic testing are the prevention of the birth of a child with a chronic genetic disease and offering prospective parents a degree of liberation from reproductive risk. These benefits are, however, tempered by a series of complex ethical, legal and social risks, which must be identified and managed if the benefits are to be maximized. The aim of this paper is to investigate how a group of experts in human genetics perceive the origin and impact of these risks. Based on a qualitative analysis of semi-structured interviews with experts in the new genetics, seven risks are identified. 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; the risk prospective parents will develop inflated expectations of genetic perfectionism; the risk of inequalities in access to genetics counselling and testing services; and the risk of fostering an increase in wrongful birth and wrongful life litigation. The findings of this study have implications for enhancing genetic risk-management policies and for improving the delivery of genetic testing services. They also have implications for advancing our understanding of the relationship between genetic health, genetic risk and society.
Additional Information: UoA 12, RAE 2008
Uncontrolled Keywords: Prenatal genetic testing; reproductive risk; reproductive freedom; genetic responsibility; genetic discrimination
Subjects: R Medicine > RB Pathology > RB151 Theories of disease. Etiology. Pathogenesis > RB155 Medical genetics > RB155.65 Screening
R Medicine > R Medicine (General) > R723 Medical philosophy. Medical ethics
R Medicine > RG Gynecology and obstetrics > RG940 Maternal care. Prenatal care services
Creators: Ekberg, Merryn E
Publisher: Routledge
Faculties, Divisions and Institutes: University Faculties, Divisions and Research Centres - OLD > Faculty of Health & Society > Sports, Exercise & Life Sciences
Faculties > Faculty of Health & Society > Sports, Exercise & Life Sciences
Date: 1 March 2007
Date Type: Publication
Page Range: pp. 67-81
Journal or Publication Title: Health, Risk and Society
Volume: 9
Number: 1
Language: English
DOI: https://doi.org/10.1080/13698570601181573
ISSN: 1369-8575
Status: Published / Disseminated
Refereed: Yes
URI: http://nectar.northampton.ac.uk/id/eprint/6

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