Scottish Family Health Study
The Generation Scotland : Scottish Family Health Study (GS:SFHS) is a £4.4 million project funded by the Scottish Executive's Genetics and Healthcare Initiative (see Timeline).
GS:SFHS has built up a large, intensively phenotyped, family-based cohort with which to study the genetic basis of common complex diseases and response to treatments. Recruitment began early in 2006 and was completed in 2011 (see Timeline). Individuals aged between 35 and 55 were approached through their GP, and these participants, together with any consenting first degree relatives (aged 18+), were invited for a detailed clinical assessment. During the clinic appointment, blood and urine samples were taken, cognitive tests performed and lifestyle information collected. The health of recruits will be monitored indefinitely by accessing their medical records. Specific research studies scheduled for GS:SFHS include cardiovascular disease, osteoporosis, pharmacogenetics and mental health. For more on GS collaborations please click here.
For information about using the samples and data collected by GS:SFHS, please see the Generation Scotland Resources page.
Public Consultation Study
Public involvement is essential for the success of GS:SFHS and therefore an early and sustainable public consultation programme is a key component of the project. The aim of the programme is to understand and explain the public reaction to a wide range of relevant issues including genetics in healthcare, the use of bioinformation, and concerns surrounding consent and confidentiality.
Partnership with the People of Scotland
Generation Scotland is a partnership with all the people of Scotland and volunteers for the Scottish Family Health Study are welcome whatever their cultural, ethnic or social background. Every group has its own mix of genetic and lifestyle factors, and because the aim of the project is to work out how these factors affect a person's chances of getting certain diseases, Generation Scotland is encouraging people from every community to get involved. Before the recruitment of volunteers began, discussions were held with several different social and cultural groups.
Many illnesses run in families, but some also run in particular ethnic groups. People from the same ethnic group share genes and often follow similar lifestyles for cultural reasons. This mix of genetic and lifestyle factors is potentially valuable to Generation Scotland, so the participation of members of ethnic minority groups in the Scottish Family Health Study is encouraged and welcomed.
To help manage the huge amount of laboratory samples and data generated by the Scottish Family Health Study, Generation Scotland has implemented a Laboratory Information Management System. For further details, click here.
Other important goals of GS:SFHS include:
GS:SFHS will create a collaboration between multiple research institutions and the NHS that will develop and share knowledge and best practice in human genetics research.
The Information Services Division of NHS National Services, Scotland and the National e-Science Centre (NeSC) are working together to create a research platform for emerging technologies to link health informatics and genetic research.
Education and Training
A computer-based genetics education package for healthcare professionals is being developed on behalf of the NHS Scotland Clinical Genetics Consortium.