Table 3 Consolidated ranking of measures to increase trust based on the top-k approach

1. Transparent information about WHO will benefit from the data access

2. The option to withdraw your information in the future

3. Knowing exactly who is using your information, and for what purpose

4. Transparent information about HOW others will benefit personally, professionally and commercially from the data access

5. The option to opt out of having your information accessed by other researchers

6. The ability to access your own DNA and/or medical information

7. Details about the sanctions applicable if my data is misused by others

8. A website that clearly explains the pros and cons of data access

9. Being able to communicate directly with gatekeepers of my DNA and/or medical information

10. Biographies and photos of the sorts of researchers who would access the data