Generation Scotland
Founded | 1999 |
---|---|
Main collaborators
Prof. Andrew Morris at the University of Dundee | |
General Enquiries Generation Scotland | |
The Web
www.generationscotland.org |
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
- the people of Scotland
- the Scottish University Medical Schools
- the Information Services Division of NHS National Services Scotland
- the MRC Human Genetics Unit, Edinburgh
- the MRC Social and Public Health Science Unit, Glasgow
- NHS Scotland
- the Scottish School of Primary Care
- the Wellcome Trust Clinical Research Facility, Edinburgh
- UK Biobank
Projects
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)
- Biomarkers for Battling Chronic Diseases (BBCD)
- Public Consultation
- Scottish Genetics Education Network (ScotGEN
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.
- 2012 Jul GS Epidemiology article published in the International Journal of Epidemiology.[11]
- 2012 Apr GS receives their 100th research collaboration proposal.
- 2012 Mar A successful GS Symposium sponsored and hosted by Health Science Scotland (HSS) & Nexxus, held in Glasgow.
- 2012 Mar A new published article, 'Alzheimer's disease risk factor complement receptor 1 is associated with depression', by Hamilton et al.[12] using GS:SFHS.
- 2012 Mar A BBC report on Prof Andrew Morris' new appointment as the Chief Scientist for Scotland.
- 2012 Feb GS form a partnership with Health Science Scotland (HSS).
- 2012 Feb Dr Shona Kerr gave a talk on GS at the Biobanking & Biomarkers workshop of the BHF CoRE synergy meeting at Guy's Hospital.
- 2012 Jan Dr Shona Kerr attended the kick-off meeting for the Markers for Subclinical Cardiovascular Risk Assessement (EU-MASCARA) project in Glasgow.
- 2011 Aug GS:21CGH receive favourable ethical opinion from NHS research ethics committee for setting up a Research Tissue Bank.
- 2011 Aug A new Lung function publication by Artigas et al. was accepted August 2011 in Nature Genetics. An example which demonstrates the value of the Generation Scotland resource.
- 2011 Jun A new PLoS ONE article by McLeish et al. published based on the incidence of H1N1 Influenza infection in Scotland.
- 2011 Apr Generation Scotland are awarded further funding from the Chief Scientist Office (CSO)
- 2011 Mar More than 24,000 volunteers in the Scottish Family Health Study. GS:SFHS sees its final recruits on 31 March.
- 2010 Nov A new published article using the Donor DNA Databank and 5,000 recruits through SNBTS by Dr Shona Kerr et al. To read more please click the link
- 2010 May GS:SFHS starts recruitment in Aberdeen.
- 2010 Apr GS:SFHS reaches 15,000 participants.
- 2010 Apr GS data used in a published study of cognitive ability and risk of cardiovascular disease.[13]
- 2010 Mar GS:3D and GS:SFHS both receive ethical approval for setting up a Research Tissue Bank.
- 2009 Dec GS samples contribute to a Nature Genetics publication on lung function.[14]
- 2009 Dec GS:21CGH recruitment completed.
- 2009 Jun GS:SFHS reaches 10,000 participants.
- 2009 May Recruitment to the GS:BBCD project starts in Aberdeen.
- 2009 Feb GS:21CGH reaches recruitment targets in Aberdeen and Peterhead.
- 2008 July Generation Scotland completes recruitment to the Donor DNA Databank (GS:3D).
- 2008 Jan Generation Scotland starts recruitment to the Donor DNA Databank (GS:3D) in Glasgow and Edinburgh.
- 2007 Nov The launch of GS:21CGH recruitment in Banff and Peterhead is marked by a Press Release and a report in The Press and Journal.
- 2007 May UK Biobank starts recruiting in Scotland. Generation Scotland and UK Biobank issue a joint Press Release highlighting the complementary nature of the two projects.
- 2007 Feb Generation Scotland starts recruitment to Genetic Health in the 21st Century (GS:21CGH) in Aberdeenshire and Edinburgh.
- 2006 Dec A press release is issued to announce that The Scottish Family Health Study has recruited its first one thousand participants.
- 2006 Nov Generation Scotland hosts a Symposium on Pharmacogenetics at the Royal College of Physicians and Surgeons in Glasgow.
- 2006 Multi-Centre Research Ethics Committee approval is granted for the Generation Scotland Donor DNA Databank project (GS:3D).
- 2006 Multi-Centre Research Ethics Committee approval is granted for the Generation Scotland Genetic Health in the 21st Century project (GS:21CGH).
- 2006 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.
- 2006 Recruitment to the Scottish Family Health Study 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.
- 2005 Multi-Centre Research Ethics Committee approval is granted for Phase I of the Scottish Family Health Study
- 2005 The GS:21CGH and GS:SFHS projects are jointly developed under the Generation Scotland banner.
- 2004 The Chief Scientist Office funds the project 'Collection of a control cohort from the Scottish population as a national DNA resource for human genetic studies', now known as GS:3D.
- 2004 The Scottish Executive Health Department awards a Genetics in Healthcare Initiative grant of £4.4m for the Scottish Family Health Study project (SFHS).
- 2003 The Scottish Executive Health Department announces the Genetics in Healthcare Initiative.
- 2003 The Scottish Higher Education Funding Council awards a Strategic Research Development Grant of £1.79m for the project Genetic Health in the 21st Century (21CGH).
- 2002 Scottish Enterprise supports Phase 2 business planning.
- 2002 Innogen initiates a Programme of Public Consultation and Engagement.
- 2002 The Generation Scotland plan is endorsed at a Discussion Dinner at the Royal Society of Edinburgh.
- 2001 Scottish Enterprise supports Phase 1 business planning.
- 1999 The Generation Scotland outline is endorsed by the Chief Medical Officer and the Chief Scientist.
- 1999 The University of Edinburgh pump-primes the Generation Scotland proposal
External links
- Generation Scotland website
- Information Services Division of NHS National Services Scotland
- Innogen
- MRC Human Genetics Unit, Edinburgh
- MRC Social and Public Health Science Unit, Glasgow
- National e-Science Centre, Edinburgh and Glasgow
- Scotgen
- Scottish School of Primary Care
- UK Biobank
- University of Aberdeen
- University of Dundee
- University of Edinburgh
- University of Glasgow
- Wellcome Trust Clinical Research Facility, Edinburgh
References
- ↑ "Study to follow Scotland's health". BBC. 2006.
- ↑ "Public Consultation". 2002–2009.
- ↑ 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. PMID 16731270.
- ↑ 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. PMID 18594048.
- 1 2 Lango 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. PMID 18088250.
- ↑ 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. PMID 15716906.
- ↑ Clayton, David G.; Cardon, Lon R.; Craddock, Nick; Deloukas, Panos; Duncanson, Audrey; Kwiatkowski, Dominic P.; McCarthy, Mark I.; Ouwehand, Willem H.; et al. (June 2007). "Genome-wide association study of 14,000 cases of seven common diseases and 3,000 shared controls". Nature 447 (7145): 661–78. doi:10.1038/nature05911. PMC 2719288. PMID 17554300. Missing
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in Authors list (help) - ↑ "GENERATION SCOTLAND LEGAL AND ETHICAL ASPECTS Graeme Laurie and Johanna Gibson, September 2003" (PDF). Edinburgh University.
- ↑ 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.
- ↑ Macleod AK, Liewald DC, McGilchrist MM, Morris AD, Kerr SM, Porteous DJ (February 2009). "Some principles and practices of genetic biobanking studies". The European Respiratory Journal 33 (2): 419–25. doi:10.1183/09031936.00043508. PMID 19181915.
- ↑ Smith BH, Campbell A, Linksted P, et al. (July 2012). "Cohort profile: Generation Scotland: Scottish Family Health Study (GS:SFHS). The study, its participants and their potential for genetic research on health and illness". Int J Epidemiol 42 (3): 689–700. doi:10.1093/ije/dys084. PMID 22786799.
- ↑ Hamilton G, Evans KL, Macintyre DJ, et al. (February 2012). "Alzheimer's disease risk factor complement receptor 1 is associated with depression". Neurosci. Lett. 510 (1): 6–9. doi:10.1016/j.neulet.2011.12.059. PMID 22244847.
- ↑ 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.
- ↑ Repapi E, et al. (January 2010). "Genome-wide association study identifies five loci associated with lung function". Nature Genetics 42 (1): 36–44. doi:10.1038/ng.501. PMC 2862965. PMID 20010834.