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

From: Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries

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