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The Scottish Family Health Study

Gill Haddow

Affiliated staff:   Sarah Cunningham-Burley

Funding: Scottish Government

June 1 2005 – June 1 2006

Background

Genetic databases are heralded as the way forward in improving the status of a population’s health through the collection of DNA samples, lifestyle questionnaires and prospective medical health care. Following from the 21CGH project, this project is working on the issues of procurement, storage, access and use of bio-information, involving and engaging the public. The project was funded by the Scottish Government.

Aims and objectives

  • To engage a range of groups in discussions about the ethical, legal and social issues relating to family recruitment, consent, withdrawal, feedback, use, confidentiality, access, use, ownership and further public consultation (including responding to requests   made by the multi-centre research ethics committee (MREC) about public discussion around feedback and commercialisation).
  • To ascertain likely participation rates and assess acceptability of processes such as recruitment method, clinical feedback and information materials.
  • To have input into the way that the DNA database is publicised in the media and elsewhere in the community from which participants will be drawn in a way that responds to local cultures and sensitivities.
  • To document and understand how and in what circumstances the findings can be incorporated into, or influence, the development of Generation Scotland: The Scottish Family Health Study, particularly in relation to future use and further research.
  • To research and evaluate the public consultation from a social scientific perspective which entails exploring the views and experiences of diverse groups, their connections to genetic research and the process of public engagement itself.

Research methods

A multi-method approach was used that combined both quantitative and qualitative methods with participants and non-participants.  However with this broad sampling umbrella we presumed there to be very different audiences (public/s, citizen groups, families and (social) scientists) who undoubtedly differ in their awareness, interest and experience of GS: SFHS. The division of method was as follows:

Non-participants:

  • Reconvened discussion groups: with publicly spirited citizens who can commit to an on-going forum for information and deliberation. We attempted to balance information and deliberation via a mixture of power-point presentations followed by spontaneous, unmoderated group work.
  • The results of this work fed into a survey of 1,000 members of the general public conducted with Ipsos MORI Scotland and focussed upon participation, access, use and governance.  Open and discrete choice questions were used.

Participants:

  • 100 exit questionnaires were conducted with participants to give a broad snap-shot of recruitment and views about the clinic processes.
  • Semi-structured interviews were conducted with individuals initially contacted about the study and the family members they were asked to recruit.

Non-participant observation of the GS: SFHS scientific committee group was also undertaken especially when the findings of the consultation were being discussed.

Key findings

  • Empirically, this research will enrich our understanding of genetic databases and the public’s views of, and attitudes to, them.
  • This analysis will provide a solid empirical foundation for future ethical, legal and social debates about genetic databases and contribute further understanding to the concerns around procurement, access, storage and use. Moreover, it will contribute to the little that is known about family dynamics in relation to recruitment to such research. We will also incorporate a more critical approach to public engagement – both as an ideology and a method.
  • The reconvened discussion groups, public survey, exit questionnaires and ethnography are complete and findings are currently being written up for publication.
  • The interviews with families are continuing.

Further information

For further information contact Gill Haddow, gill.haddow@ed.ac.uk

Publications

Smith, B., Campbell, H., Blackwood, D., Connell, J., Connor, M., Deary, I., Dominiczak, A.F., Fitzpatrick, B., Ford, I., Haddow, G., Jackson, C., Kerr, S., Lindsay, R., McGilchrist, M., Morton, R., Murray, G., Palmer, C., Pell, J., Ralston, S., St Clair, D., Sullivan, F., Watt, G., Wolf, R., Wright, A., Porteous, D., & Morris, A. (2006). Generation Scotland: the Scottish Family Health Study: A new resource for researching genes and heritability. BMC Medical Genetics, 7, pp 74