User:Bobynbt/Generation Scotland

Generation Scotland is a Biobank, a library 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 collection of genetic, medical and lifestyle data which can be used as a resource by scientific researchers to tackle a variety of important healthcare issues, such as our susceptibility to common diseases and our response to medicines. This kind of work has far-reaching implications including earlier and more accurate diagnosis, improved understanding of disease mechanisms and a reduction in drug-related side effects.

Generation Scotland’s biggest project, the Scottish Family Health Study, is recruiting thousands of family groups. Studying families rather than unrelated individuals increases the chances of detecting the genes that influence disease risk and response to drugs.

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. . Adverse reactions to prescription drugs delay recovery and drain healthcare resources. 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). 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.

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. 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.

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 (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
 * all five Scottish University Medical Schools
 * University of Aberdeen
 * University of Dundee
 * University of Edinburgh
 * University of Glasgow
 * University of St. Andrew’s
 * the Information Services Division of NHS National Services Scotland
 * the MRC Human Genetics Unit, Edinburgh
 * the MRC Social and Public Health Science Unit, Glasgow
 * the National e-Science Centre, Edinburgh and 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
 * 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.

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. For example, a customised Laboratory Information Management System 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.


 * 2009 May Recruitment to the Biomarkers for Battling Chronic Diseases (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 an international 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 2nd 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 Scientific Group 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 21CGH and 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