Research article summary (published 6 Aug 2009):

"We only did it because he asked us": gendered accounts of participation in a population genetic data collection.

Full Abstract

This article draws upon findings from an interview study with twenty-three families about participation in a large-scale population genetic database called, "Generation Scotland: The Scottish Family Health Study" (GS: SFHS). GS: SFHS aspires to become a DNA identification vehicle for the discovery of genetic contributions to diseases that affect the Scottish population e.g., cancer, heart disease and mental illness. Little is known about why families invited to take part in this type of research do so, especially when a family member is acting as a 'proxy' recruiter and is healthy with no known genetic (or otherwise) disease. Who will agree to be such a 'proxy recruiter' (or 'proband'), who GS: SFHS will recruit and why has been shown to be dependent on the existence of family disease, proband use of indirect and direct coercion, and the status of family relationships more generally. This study adds to these findings demonstrating that participation is limited by family history affecting the numbers of family members who can be recruited and enhanced by gender affecting who will be recruited. Although not mutually exclusive, the reasons for participation by probands were tied to leaving a 'healthy legacy,' whereas for the family members it was because they were asked and felt obliged to or were persuaded to by the proband. This research concludes: 1) biology is a choice not a given; 2) yet the biological basis of family relationships can give rise to a gendering of recruitment to the clinical study; and 3) women continue to be 'kin-keepers'.

Author information

Author/s: Haddow, Gillian (G);

Affiliation: ESRC INNOGEN Centre, University of Edinburgh, Old Surgeon's Hall High School Yards, Edinburgh, United Kingdom. gill.haddow(-atsign-)ed.ac.uk

Journal and publication information

Publication Type: Journal Article; Research Support, Non-U.S. Gov't

Journal: Social science & medicine (1982) (Soc Sci Med), published in England. (Language: eng)

Reference: 2009-Oct; vol 69 (issue 7) : pp 1010-7

Dates: Created 2009/09/14; Completed 2009/10/29;

PMID: 19666205, status: MEDLINE (last retrieval date: 10/29/2009, IMS Date: )

Sourced from the National Library of Medicine. Abstract text and other information may be subject to copyright.

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MeSH headings (categories)

This article was linked to the MESH Headings shown below.

Adult Aged Choice Behavior Data Collection Databases, Genetic Family Relations Female Genetic Predisposition to Disease Genetic Screening - psychology

Humans Interviews as Topic Male Middle Aged Patient Participation Patient Selection Persuasive Communication Scotland Sex Factors

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