Table 1 Scenarios used in interviews

Scenario 1: Involvement of commercial company A new blood sample screening is invented by a commercial company. The inventors think this will make it possible to detect who is more susceptible to heart disease at a much earlier age than is now possible, but the device needs to be tested further before they can be sure. If it works, it is likely to make the company a lot of money. They would like to put an application in to use the Heart of Scotland data and samples to test it further.

Scenario 2: Brain research A new screening test is developed which the inventors think will make it possible to detect who is at risk of developing dementia at a very early age (30). At the moment there are no treatments that can fully prevent or treat dementia. It may be possible to support people better if they are known to be at risk, but it could also mean that people detected early live for a long time with unwanted knowledge and could suffer discrimination. The consent for Heart of Scotland does not mention diseases related to the brain; it only covers heart disease.

Scenario 3: Educational achievement and diet research Let’s say a group of researchers want to use the Heart of Scotland resources to study educational achievement and how it is affected by diet. There is no particular focus on heart disease, but the researchers think that the database can provide them with the answer they need without having to set up a whole new study.

Scenario 4: Cross checking with police records Heart of Scotland is now approached by other researchers. They are trying to do research on a particularly sensitive area relating to heart disease – they want to know if a history of crime in the family predicts outcomes of heart disease. They therefore want to check police records against Heart of Scotland data.

Scenario 5: Human embryos research Now, let’s imagine Heart of Scotland is approached by researchers wanting to use biological samples in research involving human embryos. In line with UK law, licensed research can only take place on embryos up to 14 days.

Scenario 6: Data sent overseas Heart of Scotland can allow access to anonymised data and samples to approved groups of researchers abroad.

Scenario 7: Feedback on personal health issues When Heart of Scotland was set up, it was made clear to participants that they would not get any feedback on clinical relevant findings. For example, if it was discovered that a person had a genetic mutation that meant that were at high risk of breast cancer, they would not be told by Heart of Scotland. A change in this policy is proposed.

Scenario 8: Cancer research Let’s imagine that Heart of Scotland has been running for 10 years. A change in funding means it is now being asked to use its samples and data to study cancer as well as heart disease.