SFHS Participants Continue to Support Generation Scotland
GS is contacting over 21,000 Scottish Family Health Study (GS:SFHS) participants in a bid to allow researchers from around the world access to this important research resource.
GS:SFHS recruited 24,000 individuals from families across Scotland from February 2006 to March 2011. All participants filled in a health and lifestyle questionnaire and provided a blood or saliva sample which were used to extract a DNA sample. Over 21,000 also underwent clinic assessments (e.g. blood pressure, lung function and mental health) and provided a urine sample. GS has now received over 100 requests to use GS:SFHS samples, some from researchers outside the UK.
Seeking New Consent
It was originally anticipated that all GS sample analysis would be conducted in the UK, so when GS:SFHS participants gave consent, they agreed that samples and data could be used for medical research in the UK and that researchers in other countries could access data only. It is now clear that there are some kinds of research that can only be done in specialist labs outside the UK, so to maximise the use of GS resources we are seeking additional consent to allow this.
Pamela Linksted, GS Chief Operations Officer, said, "Over 50 projects have already used GS:SFHS samples and data for research on a wide range of conditions. As more researchers get to hear about the resource and its potential uses, we have an increasing number of requests to send samples outside the UK. It is important that we make the most of participants' contributions to GS, so we are asking for explicit consent to allow this. Support of our research participants is vital and allows us to continue to support top class medical and genomic research."
Contacting 21,000 Participants
GS does not hold the names and addresses of participants; contact details are retained by the NHS. Participants' samples and data are linked to these details by a code. GS is writing to participants via the University of Dundee Health Informatics Centre (see link below) using this code, seeking their consent to allow samples to be used in laboratories outside the UK. In each envelope, there is a letter and Participant Information Leaflet explaining what is being asked of them, the consent form itself and a newsletter (see below) detailing the latest news about the study.
Over 21,000 letters have now been sent and replies are coming in their thousands. Pamela Linksted said "We have had a tremendous initial response to our request, and hope that many more will consent to international use. We are very grateful to all our research participants for their continued support."