Centre for Genomic and Experimental Medicine
Institute for Genetics and Molecular Medicine
University of Edinburgh
Western General Hospital
Crewe Road South,
Edinburgh EH4 2XU, UK
Generation Scotland is a biobank, a resource of biological samples and information on health and lifestyle from thousands of volunteer donors in Scotland.
The aim of Generation Scotland is to create an ethically sound, family- and population-based infrastructure to identify the genetic basis of common complex diseases.[1] The Generation Scotland concept has been evolving for several years (see timeline), and now involves three complementary projects, the Scottish Family Health Study GS:SFHS, Genetic Health in the 21st Century GS:21CGH, and the Donor DNA Databank GS:3D. Together these projects have recruited a cohort of over 30,000 people.
Generation Scotland is establishing multi-disciplinary skills networks in genetic epidemiology, statistical genetics and health informatics. Social scientists have been involved from the start, conducting a public consultation process[2] and addressing ethical, legal and social issues. The output from these projects will be of value to the biomedical, sociomedicolegal, healthcare and bioindustry sectors.
Background
The main focus of Generation Scotland is on identifying the inherited factors, or genes, that influence our risk of being affected by a number of common causes of ill health, including heart disease, diabetes, mental illness, obesity, stroke and diseases of the bones and joints. Our genes also influence how we respond to different medicines. The basic idea behind Generation Scotland is that by comparing the genes in large groups of people (such as patients and healthy people, or people who respond well to a medicine and people who do not) researchers will be able to work out which genetic factors contribute to our chances of becoming unwell or of suffering from drug-related side-effects.
Common disorders such as heart disease and diabetes are significant causes of chronic ill health and death in middle-aged people.[3] Adverse reactions to prescription drugs delay recovery and drain healthcare resources.[4] Generation Scotland is therefore addressing issues of major public health importance.
Disease risk and drug response are examples of complex traits. Instead of having a single cause, complex traits typically result from a combination of factors including genes, environment and lifestyle (diet, smoking history, exercise patterns, use of other medicines etc.).[5] Until very recently there was no efficient way of systematically searching for the genetic factors that underlie complex diseases. However the completion of the Human Genome Project, coupled with technological advances that allow rapid comparison of thousands of DNA samples, means that the necessary methods are now available.[5][6]
Detection of the relevant genetic factors depends on statistical analysis of data obtained by comparing the DNA of people with and without a particular trait (cases and controls, respectively). This is a powerful approach which has already yielded considerable success.[7] However thousands of individuals must be recruited for such case-control studies to generate meaningful results and this is often beyond the means of smaller research groups.
Generation Scotland has put in place the considerable infrastructure required to recruit the necessary numbers of participants, to collect, process and securely store the associated biological samples and data, and to make these available to the wider research community. Scientists who are planning research into the causes or treatments of common complex diseases and who have appropriate approval from a Research Ethics Committee can apply to use the resource in accordance with Generation Scotland's Access Policy. All data generated in this way will be fed back to Generation Scotland and will in turn form part or the resource.[8]
Funding
Generation Scotland is funded by
a Strategic Research Development Grant of £1.79m from the Scottish Higher Education Funding Council (2003)
a Genetics in Healthcare Initiative grant of £4.4m from the Scottish Government Health Directorates (2004)
a grant of £170,209 from the Chief Scientist Office Biomedical and Therapeutic Research Committee (now the Experimental and Translational Medicine (ETM) Research Committee) (2004)
a grant of £3.8m from the Scottish Government Health Directorates (2008)
Collaborators
Generation Scotland is a multi-institution, cross-disciplinary collaboration involving
Generation Scotland involves several disciplines including medicine, science, education and social science. This is reflected by the diversity of projects in the Generation Scotland portfolio:
Scottish Family Health Study (GS:SFHS)
Genetic Health in the 21st Century (GS:21CGH)
Donor DNA Databank (GS:3D)
Public Consultation
Public consultation
Public involvement is essential for the overall success of any biobank and therefore one of the first Generation Scotland projects to get underway was a programme of public consultation. The aim of the programme is to foster a relationship of trust between potential participants and scientists and to understand and explain public reaction to a wide range of relevant issues including genetics in healthcare, the use of bioinformation, and concerns surrounding consent and confidentiality.[9]
Information technology and research infrastructure
Biobank projects require considerable infrastructure to ensure that samples and data gathered from volunteers at the various recruitment centres are collected efficiently, processed and stored securely, and analysed effectively. Generation Scotland has designed protocols to standardise and integrate all stages of the process from volunteer recruitment to data handling.[10] For example, a customised Laboratory Information Management System (LIMS) is being used to track samples as they move from the clinics to the Wellcome Trust Clinical Research Facility, Edinburgh for processing and storage, and then on to the research laboratories for analysis.
Timeline
The Generation Scotland concept has evolved over many years. Below is a list of the key milestones in the development of Generation Scotland and its associated projects.
2020
New GS branding developed by the team for new study. Due to the Coronavirus (COVID-19) outbreak, they also began new research into the Government's regulations and their impact on mental health and well being. The new study is called CovidLife
2019
GS help in research to find 102 genes linked to depression and evidence of heart injury. Later in the year they were awarded funding to enrol another 20,000 volunteers into the study
2018
300th research application received and volunteers are celebrated for their contribution to Scottish research
By the end of 2006, 1000 participants have enrolled in GS:SFHS.
Generation Scotland hosts a Symposium on Pharmacogenetics at the Royal College of Physicians and Surgeons in Glasgow.
Multi-Centre Research Ethics Committee approval is granted for the GS:21CGH and GS:3D projects.
Generation Scotland is officially launched on 2 February 2006 by Andy Kerr MSP, Minister for Health and Community Care, and Professors Andrew Morris and David Porteous. The launch is accompanied by a press release and newspaper and TV coverage.
Recruitment to GS:SFHS starts in January 2006.
2005
The Generation Scotland Scientific Committee agrees that the Donor DNA Databank project (GS:3D) should come under the management and governance of Generation Scotland.
Multi-Centre Research Ethics Committee approval is granted for Phase I of GS:SFHS.
The GS:21CGH and GS:SFHS projects are jointly developed under the Generation Scotland banner.
^Lopez AD, Mathers CD, Ezzati M, Jamison DT, Murray CJ (May 2006). "Global and regional burden of disease and risk factors, 2001: systematic analysis of population health data". Lancet. 367 (9524): 1747–57. doi:10.1016/S0140-6736(06)68770-9. PMID16731270. S2CID22609505.
^Kongkaew C, Noyce PR, Ashcroft DM (July 2008). "Hospital admissions associated with adverse drug reactions: a systematic review of prospective observational studies". The Annals of Pharmacotherapy. 42 (7): 1017–25. doi:10.1345/aph.1L037. PMID18594048. S2CID30318488.
^ abLango H, Weedon MN (January 2008). "What will whole genome searches for susceptibility genes for common complex disease offer to clinical practice?". Journal of Internal Medicine. 263 (1): 16–27. doi:10.1111/j.1365-2796.2007.01895.x. PMID18088250.
^Hirschhorn JN, Daly MJ (February 2005). "Genome-wide association studies for common diseases and complex traits". Nature Reviews Genetics. 6 (2): 95–108. doi:10.1038/nrg1521. PMID15716906. S2CID2813666.
^Haddow, Gill; Cunningham-Burley, Sarah; Bruce, Ann; Parry, Sarah (2008). "Generation Scotland: consulting publics and specialists at an early stage in a genetic database's development". Critical Public Health. 18 (2): 139–149. doi:10.1080/09581590701824086. S2CID145305386.
^Luciano, M.; Batty, G. D.; McGilchrist, M.; Linksted, P.; Fitzpatrick, B.; Jackson, C.; Pattie, A.; Dominiczak, A. F.; Morris, A. D.; Smith, B. H. (May–June 2010). "Shared genetic aetiology between cognitive ability and cardiovascular disease risk factors: Generation Scotland's Scottish family health study". Intelligence. 38 (3): 304–313. doi:10.1016/j.intell.2010.03.002.
