The largest-ever international survey on genomics reveals significant public distrust in sharing DNA for research and medical purposes. The survey results, published in the American Journal of Human Genetics, highlight potential challenges for genomic research, including forensic applications.
The largest-ever international survey on genomics found that less than half of those surveyed would share their DNA for research and medical purposes, citing trust as a major factor in their decision
Survey Overview
The “Your DNA, Your Say” survey, completed by 36,268 participants from 22 countries in 15 languages, indicates a low willingness to donate DNA and health data. Trust in data sharing with doctors, researchers, and governments is also low.
Key Findings
Willingness to Donate DNA
- 52% of participants are willing to donate DNA and medical information to medical doctors.
- Significantly fewer participants are willing to share DNA with for-profit researchers.
Trust in Multiple Users
- Only 42% of participants trust multiple users with their DNA or health information.
- Trust varies by country, with higher trust levels in China, India, the UK, and Pakistan, and lower levels in Egypt, Russia, Germany, and Poland.
Familiarity with Genetics
- 64% of participants are unfamiliar with DNA, genetics, and genomics.
- Japan has the highest percentage of participants unfamiliar with genetics (88%).
- Italy and the United States have the lowest percentage of unfamiliarity (~40%) and the highest familiarity with genetic research (~38%).
Implications for Genomic Research
The survey underscores the need for the research community to build public trust and effectively communicate the importance and benefits of genomic research. Anna Middleton, Head of Society and Ethics Research in Connecting Science, emphasizes that a loss of global trust could hinder genomic research and societal benefits.
How can the research community improve public trust in genomic research and data sharing? Share your thoughts and join the discussion!
Source: Global Survey: Majority of People Unwilling to Share DNA, Trust is Low
