Table 1 YDYS survey question relating to measures that would help people to trust recipients of donated DNA/medical information

Q: What information would help you to trust the people asking you to donate DNA information and/or medical information? (choose all that apply)

• Transparent information about WHO will benefit from the data access

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

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

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

• The option to withdraw your information in the future

• Biographies and photos of the sorts of researchers who would access the data

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

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

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

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

• Other, please provide:

• I would not donate my DNA information and/or medical information