De-identified genomic data sharing: the research participant perspective.

Area of Science:

• Genomic research
• Bioinformatics
• Participant recruitment

Background:

• Large-scale research initiatives like the Precision Medicine Initiative and Cancer Moonshot rely on combined datasets.
• Participant anonymity is often maintained by removing personal identifiers from research data.
• Understanding participant perspectives on de-identified data use is crucial for future genomic research endeavors.

Purpose of the Study:

• To examine participant preferences regarding the use of de-identified data in large genetic research datasets.
• To evaluate how demographics and cancer history influence these preferences.
• To assess participant views on maintaining a link between individuals and their de-identified genetic data.

Main Methods:

• A quantitative study was conducted in the USA.
• Participants were recruited from the Northwest Cancer Genetics Registry, including cancer patients, relatives, and controls.
• A secure online survey was administered to 450 participants.

Main Results:

• The majority of participants were not concerned about personal identification with de-identified genetic data but emphasized the need for privacy protection.
• Most participants desired their data to be available for numerous research studies to potentially receive personal health information.
• Approximately 20% of participants preferred that a link between them and their de-identified data not be maintained.

Conclusions:

• Participant trust in researchers' ability to protect privacy is paramount when using de-identified genetic data.
• Facilitating broad data sharing while respecting privacy concerns is key to successful recruitment in genomic research.
• The debate on maintaining links to de-identified data involves balancing research support and individual health result return.