Generation Scotland is a Biobank, a resource of biological samples and information on health and lifestyle from thousands of volunteer donors in Scotland.
Contents
- Background
- Funding
- Collaborators
- Projects
- Public consultation
- Information technology and research infrastructure
- Timeline
- References
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. 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 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. 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
Collaborators
Generation Scotland is a multi-institution, cross-disciplinary collaboration involving
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:
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 (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.