Public attitudes toward data sharing can hinder genomics research

According to the largest ever survey on global public attitudes towards genomic research and data sharing, more work is required to increase the levels of public trust in how genetic information is used to allow that data to meet its promise to improve medicine and human health.

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Scientists from the Society and Ethics Research team at Connecting Science and their colleagues learned that less than 50% of those who were surveyed would be happy if their genetic data is shared for more than one purpose.

Published in the American Journal of Human Genetics on September 17^th, 2020, the study emphasizes the extent to which public audiences are not familiar with, and not willing to take part in, genomic studies. This lack of trust in whom data is shared with could considerably impede genomic research, which depends on the potential for clinicians, for-profit, and non-profit scientists to share genetic information with one another worldwide.

To assess public attitudes towards genomic research and data sharing, a research team in the Society and Ethics Research Group and colleagues around the world, delivered the “Your DNA, Your Say” survey, which was finished by 36,268 members of the public across 22 nations and in 15 languages.

The study contributes to policy for the Global Alliance for Genomics and Health (GA4GH)—the international community standards organization for genomics.

Altogether, around two in three respondents stated that they were not familiar with DNA, genomics and genetics. While 52 % of respondents stated they would donate anonymous DNA and medical data for use by medical doctors, only one in three stated that they would donate it for use by for-profit firms. Overall, only 42 % of people stated that they would trust a minimum of two organizations or individuals with their DNA and health data.

Our survey found a wide gap between how medical professionals on one hand and for-profit researchers on the other are trusted to use personal genetic and healthcare data. Given the prevalence of public-private partnerships in many countries, this is a problem that needs to be addressed—because the benefits to human health that genomics provides requires data to be open to all researchers.”

Dr Richard Milne, Study Author, Society and Ethics Research Group, Connecting Science

The global nature of the research showed a few national idiosyncrasies. Fewer than 30% of participants in Poland, Germany, Egypt, and Russia stated that they trusted more than a single user of data, while over 50% in India, China, Pakistan, and the United Kingdome trusted multiple users.

In a few nations—mostly particularly India, but to a lesser extent the United States, Pakistan, and China—there is less distinction between for-profit and non-profit study, with marginally higher acceptance of the requirement to share information with for-profit organizations.

No single research institute or country will be able to fully understand how genes and environment interact to cause disease without global collaboration. The community must develop harmonized approaches to the sharing of anonymised genetic and healthcare data from millions of individuals, representing the whole spectrum of human diversity.”

Peter Goodhand, CEO, Global Alliance for Genomics and Health (GA4GH)

Goodhand continued, “We must build broad societal acceptance that donation and sharing of data is of benefit to humankind, so that public audiences can be part of the conversation that determines how genomics will deliver the best outcomes for society.”

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.”

Anna Middleton, Study Lead Author and Professor, Wellcome Genome Campus

Middleton is also the Head of Society and Ethics Research in Connecting Science at the Wellcome Genome Campus.