The largest ever survey looking at global public perceptions of genomic data sharing suggests that more work is needed to increase the level of public trust in how genetic data is being used. This is essential to fulfil the true promise of genomic medicine.
To develop our understanding of genetic factors and their role in health and disease, we must analyse genomic and health data across populations. Responsible data sharing along with trustworthy data governance will ensure that the delivery of genomic medicine is equitable. However, the fundamental success of data sharing relies upon public support and trust.
In a study, published in The American Journal of Human Genetics, researchers explored public opinion on genomic data sharing. The “Your DNA, Your Say” project is a very large social sciences study exploring public attitudes towards genomic data sharing. The team drew upon responses from 36,268 individuals across 22 countries ( in 15 languages) who completed the survey. They explored the respondents’ willingness to donate different types of data and how this willingness is shaped by several factors.
Summary of findings:
- Around two in three respondents said they were unfamiliar with the terms DNA, genetics and genomics.
- Although 52% said they would donate anonymous DNA and medical information for use by medical doctors, only one in three said they would donate it for use by for-profit companies.
- Overall, only 42% of respondents said they would trust more than one potential user of data (i.e. doctors, non-profit researchers, commercial researchers and governments). This however varied between countries.
- Respondents did not uniformly see genetic and health information as different. However, they did consider genetic information as special in some way.
These results indicate that public willingness to donate data for research across the world is low. Additionally, willingness to trust multiple users with shared data is also low. The team’s findings demonstrate the importance of familiarising the public with the purposes of genomic research and the need for data sharing. The field relies on the willingness of the public to share their data. Therefore, trust is key in shaping people’s willingness to donate data.
The study provides valuable insights for policy makers, genomic researchers, clinicians and governments who are implementing genomic research strategies globally. The team note that the field of genomics needs to do more in explaining and inviting public debate about the contributions genomic research makes towards understanding, predicting and ultimately treating disease. They encourage a two-way dialogue. To maximise the benefits from genomic data, acknowledging and responding to factors that shape willingness to donate data is critical. The research community needs to be worthy of public trust. Therefore, they need to ensure that they communicate transparent and authentic information.
Professor Anna Middleton, lead author and Head of the Wellcome Genome Campus Society and Ethics Research, stated:
“Genomic research is at heart a Big Data science, but it can be easy to forget that each data point originally belonged to a human being. We have shown that public willingness to donate genomic data and trust in data sharing is low around the globe; it is time for the research community to take this seriously. A loss of a global trust could irreparably damage our ability to carry out genomic research, stalling access to important societal benefits. Genomic research exists to serve society, not the other way around.”