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

APPENDIX G: EXAMPLES OF BENEFIT SHARING MODELS

Example 1

Generation Scotland is a resource containing biological samples from more than 30,000 people across Scotland. These samples are used by a variety of researchers in universities, the NHS and the private sector. In some cases research conducted using these samples might result in a profit for the research organisation. In these cases, the income is shared evenly between the universities, the NHS and commercial partners as well as with the Generation Scotland programme. People who donate samples to Generation Scotland do not receive financial benefits, however they may receive health advice.

Example 2

In Newfoundland and Labrador, in Canada, 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 were included in all research proposals. This committee considers research proposals on a case by case basis. This means that local people have control over how their health data is accessed and also means that local research infrastructure is developed and expanded.

Example 3

SHARE is a database of volunteers coordinated by the NHS in Scotland. The volunteers are people who have expressed an interest in participating in health research and who agree to allow SHARE to use information from their NHS computer records to check whether they might be suitable for particular research studies. The volunteers can then be contacted and invited to take part in particular studies. In some cases they might receive payment for their participation but in most cases they do not. The benefits of taking part are the potential improvements in health or healthcare in Scotland