Public Acceptability of Data Sharing Between the Public, Private and Third Sectors for Research Purposes

Footnotes

1. The Scottish Government's Strategy for improving data access and analysis is for the public, private and the third sectors in Scotland. Accordingly, on commissioning of the research, a decision was taken to expand the scope of enquiry to include the third sector.

2. (see the Edinburgh Study of Youth Transitions and Crime http://www2.law.ed.ac.uk/cls/esytc/)

3. The Scottish Government's Strategy for improving data access and analysis is for the public, private and the third sectors in Scotland. Accordingly, on commissioning of the research, a decision was taken to expand the scope of enquiry to include the third sector.

4. Participants' level of trust in public bodies was established using the following question, included in the recruitment questionnaire: 'I will read you a list of different types of people. For each, would you tell me if you generally trust them to tell the truth, or not?' The Scottish Government; local councils; researchers in universities; the NHS; The Police; private companies; charities.

5. Generation Scotland is a resource containing biological samples from people across Scotland. These are used by researchers in universities, the NHS and the private sector. Where research using samples results in profit, the income is shared evenly between the organisations involved and the Generation Scotland programme. People who donate samples may receive health advice.

6. SHARE is a database of volunteers who have expressed an interest in participating in health research. Volunteers who are suitable for particular research studies are identified from their NHS records and can then be contacted and invited to take part. In some cases they might receive payment for their participation but in most cases they do not.

7. In the Province, where a significant amount of genetic research is carried out due to the particular genetic composition of the local population, a local committee was set up to ensure that benefit-sharing arrangements are included in all research proposals. This committee considers proposals on a case-by-case basis and provides local people with control over how their health data is accessed.

8. Each participant was given 10 'voting' stickers and asked to allocate them to the five forms of involvement according to their preferences; for example, if they felt that each form of involvement was equally important, they would allocate two stickers to each; if they felt one was the over-riding priority, they would allocated all ten stickers to that feature; and so on.