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21st Century Genetic Health

Gill Haddow

Principal investigator(s):   David Porteous

Affiliated staff:   Sarah Cunningham-Burley   Renate Gertz

Funding: Scottish Funding Council

October 1 2003 – October 1 2007

Background

This project arose from the Generation Scotland project funded in 2002-3. The aim is to investigate the interaction of genes and environment in the onset and progression of the serious diseases affecting the Scottish population. 21CGH brings together the parallel, yet different, projects of Generation Scotland and UK Biobank. SFC has funded the appointment of Dr Gill Haddow in Innogen and Dr Rena Gertz in the AHRB Research Centre for Studies in Intellectual Property and Technology Law as Research Fellows for 3 years to take forward the associated ethical, legal and social aspects (ELSA) programme within 21CGH.

21CGH is a multi-institution, cross-disciplinary collaboration led by the University of Edinburgh, embracing all of the Scottish Medical Schools, other important research institutes and the NHS in Scotland to create a novel consortium based approach to addressing important health priorities in Scotland. It has been funded by the Scottish Funding Council (SFC) (www.sfc.ac.uk ) through their Strategic Research Development Grant Initiative (Value and duration of award: £1.79 million, October 2003-2007).

21CGH will establish an enabling platform for translational application of the new genetic knowledge, backed by a multi-disciplinary and self-sustaining skill network in genetic epidemiology and health informatics. Our current role is specifically related to the public consultation on ethical, legal and social issues arising from the construction of DNA databases. Active and continuous public engagement is essential if we are to create and sustain a socially acceptable programme of genetic health research that addresses all of the attendant ethical and legal issues. 21CGH sought to engage with the people of Scotland, public interests groups, elected representatives and the media in order to articulate the objectives, solicit opinion and respond to concerns.

Aims and objectives

  • 21CGH addresses directly Scotland’s three health priority areas - cancer, heart disease / stroke and mental health - and more.
  • 21CGH provides the essential scientific infrastructure and social, ethical and legal framework on which multi-disciplinary research can build to identify, evaluate and utilise heritable (genetic) risk factors in early diagnosis, disease monitoring, treatment optimisation, avoidance of adverse drug reactions, healthcare planning and drug discovery.

Research methods

Between April and July 2003, seventeen in-depth open-ended interviews were conducted with people broadly identified as `specialists' in key fields with some relevance to genetic databases (i.e., geneticists, lawyers or theologians). Although we refer to them as "specialists", their knowledge and experience varied according to discipline and also closeness to genetic related research. In January - March 2004, ten focus groups were undertaken, chosen to reflect a range of demographics (gender, ethnicity, and age), interests (patient, voluntary and civic groups), and localities (rural, semi-rural or urban).

Key findings

In both the public and specialist components of this preliminary consultation exercise we were keen to explore a range of issues. Although there was variation both within and between the two components, this was variation of degree and not of kind. We asked for opinions on participation, recruitment, withdrawal, access, consent, feedback (general/specific), public engagement, and confidentiality. We encouraged participants to raise issues themselves, to be candid about their concerns and to draw specifically on their own areas of interest as well as provide more general comment. The findings show public concern around consent, storage, access and use of genetic data.

Further information

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