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

Social Science and Medicine

Volumn 69, Issue 7, 2009, Pages 1010-1017

  Haddow, Gillian ^a  

^a UNIVERSITY OF EDINBURGH   (United Kingdom)

Author keywords

Family; Gender; Genetics; Health; Participation; Population genetic data collections; Proband; Scotland; UK

Indexed keywords

DATABASE; GENDER; PARTICIPATORY APPROACH; POPULATION GENETICS; RESEARCH WORK;

ADULT; AGED; ARTICLE; FAMILY; FAMILY HISTORY; FEMALE; GENDER; GENETIC DATABASE; HEART DISEASE; HUMAN; MALE; MALIGNANT NEOPLASTIC DISEASE; MENTAL DISEASE; POPULATION GENETICS; SEMI STRUCTURED INTERVIEW; UNITED KINGDOM;

ADULT; AGED; CHOICE BEHAVIOR; DATA COLLECTION; DATABASES, GENETIC; FAMILY RELATIONS; FEMALE; GENETIC PREDISPOSITION TO DISEASE; GENETIC SCREENING; HUMANS; INTERVIEWS AS TOPIC; MALE; MIDDLE AGED; PATIENT PARTICIPATION; PATIENT SELECTION; PERSUASIVE COMMUNICATION; SCOTLAND; SEX FACTORS;

EURASIA; EUROPE; SCOTLAND; UNITED KINGDOM; WESTERN EUROPE;

EID: 69849116084     PISSN: 02779536     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.socscimed.2009.07.028     Document Type: Article

References (29)

1. Bell N.W., and Vogel E.F. A modern introduction to the family (1961), Routledge, London
2. Beskow L., Botkin J., Daly M., Juengst E., Lehmann Soleymann L., Merz J., et al. Ethical issues in identifying and recruiting participants for familial genetic research. American Journal of Medical Genetics 130A (2004) 424-431
3. Bornat J., Dimmock B., Jones D., and Peace S. Generational ties in the 'new' family: changing contexts for traditional obligations. In: Silva E.B., and Smart C. (Eds). The new family? (1999), Sage, London 115-128
4. Carey G. Human genetics for the social sciences (2003), Sage, London
5. Carsten J. Introduction: cultures of relatedness. Cultures of relatedness: New approaches to the study of kinship (2000), Cambridge University Press, Cambridge
6. Carsten J. After kinship (2004), Cambridge University Press, Cambridge
7. Cheal D. Sociology of Family Life (2002), Palgrave, Hampshire
8. Cicirelli V. Sibling Relationships across the Life Span (1995), Plenum Press, New York and London
9. Edwards J., and Strathern M. Including our own. In: Carsten J. (Ed). Cultures of relatedness: New approaches to kinship (2000), Cambridge University Press, Cambridge 149-166
10. Finch J., and Mason J. Obligations of kinship in contemporary Britain: is there normative agreement?. British Journal of Sociology 42 3 (1991) 345-367
11. Finch J., and Mason J. Passing on: Kinship and inheritance in England (2000), Routledge, London/New York
12. Forrest K., Simpson S.A., Wilson B.J., van Teijlingen E.R., McKee L., Haites N., et al. To tell or not to tell: barriers and facilitators in family communication about genetic risk. Clinical Genetics 64 (2003) 317-326
13. Franklin S., and McKinnon S. Relative values: Reconfiguring kinship studies (2001), Duke University Press, Durham
14. Haddow G., Cunningham-Burley S., Bruce A., and Parry S. Generation Scotland: consulting publics and specialists at an early stage in a genetic database's development. Critical Public Health 18 2 (2008) 139-149
15. Haddow G., Cunningham-Burley, S., Murray, L., Myant, K., & Carlsson, A. Can the governance of a population genetic data bank effect recruitment? Evidence from the public consultation of Generation Scotland. Public Understanding of Science, in press.
16. Haimes E., and Whong-Barr M. Levels and styles of participation in genetic databases: a case study of the North Cumbria Community Genetics Project. In: Tutton R., and Corrigan O. (Eds). Genetic databases: Socio-ethical issues in the collection and use of DNA (2004), Routledge, London 57-77
17. Hallowell N. Doing the right thing: genetic risk and responsibility. Sociology of Health and Illness 21 5 (2001) 597-621
18. Kreiger N., Ashbury F., Cotterchio M., and Macey J. A qualitative study of subject recruitment for familial cancer research. Annals of Epidemiology 11 4 (2001) 219-224
19. Macleod, A. K. Personal communication. June 2009.
20. Mason J. Tangible affinities and the real life fascination of kinship. Sociology 42 1 (2008) 29-45
21. Morgan D.H.J. Family connection: An introduction to family studies (1990), Polity Press
22. Mauthner M. Sistering: Power and Change in Female Relationships (2005), Palgrave Macmillan, Hampshire
23. Ottoman R., Berenson K., and Barker-Cummings C. Recruitment of families for genetic studies of epilepsy. Epilepsia 46 2 (2005) 290-297
24. Richards M. It runs in the family: lay knowledge about inheritance. In: Clarke A., and Parsons E. (Eds). Culture, kinship and genes (1997), Macmillan Press, Basingstoke 175-194
25. Schneider D.M. American kinship: A cultural account (1968), Prentice Hall, Englewood Cliffs, NJ
26. Silva E.B., and Smart C. The new family? (1999), Sage, London
27. Smith B., Blackwood D., Campbell H., Connell J., Connor M., Deary I., et al. Generation Scotland: the Scottish Family Health Study: a new resource for researching genes and heritability. BMC Medical Genetics 7 74 (2006)
28. Sorenson J.R., Cheuvront B., Bruning A., Talton S., DeVellis B., Koch G., et al. Proband and parent assistance in identifying relatives for cystic fibrosis carrier testing. American Journal of Medical Genetics 63 (1996) 419-425
29. Weston K. Forever is a long time: romancing the real in gay kinship ideologies. In: Yanagisako S., and Delaney C. (Eds). Naturalizing power: Essays in feminist cultural analysis (1995), Routledge, New York 87-112 1