Open sharing of genomic data: Who does it and why?

Area of Science:

• Genomics and Bioinformatics
• Bioethics and Data Privacy
• Consumer Health Informatics

Background:

• Direct-to-consumer genetic testing (DTC-GT) provides individuals with genetic information.
• Voluntary open sharing of DTC-GT data occurs on platforms like openSNP without institutional oversight.
• Understanding the characteristics and motivations behind this open data sharing is crucial.

Purpose of the Study:

• To characterize individuals who openly share their DTC-GT data on the openSNP platform.
• To identify the primary motivations driving individuals to share their genetic or genomic data publicly.
• To assess awareness and perceived risks associated with open genetic data sharing.

Main Methods:

• Exploratory study analyzing demographic characteristics and motivations of open data sharers.
• Data collected from individuals sharing genetic/genomic data on the openSNP web platform.
• Analysis of geographical distribution, demographics, and stated reasons for testing and sharing.

Main Results:

• The USA dominated geographical distribution; demographics showed no significant gender divide, broad age range, varied education, and equal representation of parents and non-parents.
• Motivations for testing included self-knowledge, advancing medical research, improving genetic test predictability, and data exploration, with health being prominent but not sole driver.
• Most participants were aware of privacy risks but perceived the likelihood of personal repercussions as negligible.

Conclusions:

• Individuals openly sharing DTC-GT data are diverse, with motivations extending beyond health.
• The study highlights the need to consider broader, multi-faceted conceptualizations of genomic utility.
• Findings underscore the importance of understanding non-health-related benefits and risks in genetic data sharing.