Generation Scotland: Public Views on Participating in a Genetic Database for Medical Research
Ipsos was commissioned by Generation Scotland (a collaboration between Scottish Universities' Medical Schools, many other biomedical research institutes and the NHS Scotland) to undertake a random, pre-selected survey of 1,000 people across Scotland.
The survey used discrete choice modelling to find out what factors would encourage and discourage people from taking part in a major medical research study. The medical study looks at the genetic factors involved in major diseases such as cancer, heart disease and stroke and involves participants to donating a sample of their DNA to a genetic database, undergoing a medical, answering questions on their lifestyle and family history and allowing access to medical records. Our discrete choice experiment identified which of the following complex issues are likely to affect participation: consent arrangements, the time period for keeping DNA samples, withdrawal arrangements, whether pharmaceutical companies should have access to DNA samples, and how benefits (e.g. pharmaceutical company profits) should be shared.
The survey was undertaken with a random pre-selected sample of the adult population in Scotland. Interviews were conducted face-to-face in respondents’ homes between 29th July and 26th October 2006. A total of 1,001 interviews were completed. There were 69 sampling points. The response rate was 59%. The data was weighted to account for the unequal probabilities of selection for respondents in households containing more than one individual over the age of 16. No further weights were applied.
The results of the research were reported in the journal, Public Understanding of Science.
