Privacy, security and compensation: what is expected from donating one’s genomic data?
Results from a nationally representative survey suggest that as individuals are made more aware of the commercial nature of genomic database companies, they may become more concerned by secure use of their data and expect greater compensation for sharing them.
Researchers from Penn State University (PA, USA) and Cornell University (NY, USA) have conducted a nationally representative survey of the general public and observed that as individuals are made more aware of how their data may be used commercially by genomic database companies, they express greater concern over data security, privacy and may expect more compensation for donating their data.
The number of genomic databases is increasing across many sectors – their uses are no longer restricted to academic-sponsored biomedical investigations and data privacy concerns are increasingly coming to light.
In this study, to determine how these trends may be impacting the views of the general public and, in turn, their willingness to altruistically share their genomic data with database institutions, researchers interviewed officials involved in genomic data governance at 12 different organizations and constructed a survey for provision to more than 2000 members of the US general public.
Investigators provided study participants with mainstream media coverage of genomic database companies before querying them as to their willingness to share their data for use in biomedical research by fictitious for-profit institutions, and at what cost.
Researchers observed that 11.7% of survey respondents attested that they would willingly donate their data to genomic database companies, at no cost. However, 50.6% of study participants were only willing to share their data in return for a net median US$95 in compensation; 37.8% of respondents would not donate their date at all, regardless of compensation.
Further, the team evaluated how survey respondents’ willingness to share their genomic data altered in response to proposed data governance laws. Propositions that gave individuals the ability to request deletion of their data at a later date and provided assurances that their data would not be sold or shared beyond the organization collecting it increased participants’ willingness.
By contrast, policies that allowed for the sale of database access to pharmaceutical companies or the provision of data to the federal government resulted in increased reluctance to donate data.
The study authors acknowledge, however, that the intentional priming of study participants with factual media coverage on the commercial nature of database companies prior to their responding to the survey, whilst important for answering their research question, could have biased individuals' responses.
Lead study author Forrest Briscoe (Penn State University) explained: “As human genomic data collection rises, the organizations responsible for managing these data are developing and refining their internal policies and protocols related to data end uses, transparency and security...we found that the majority of respondents clearly prefer a more transparent and participant-centric governance approach that gives them more control, confidence and compensation.”
“Our findings offer a forward-looking window on individual preferences that can be useful for institutions of all types as they develop governance approaches in this area of large-scale data sharing,” Briscoe concluded.
Briscoe F, Ajunwa I, Gaddis A, McCormick J. Evolving public views on the value of one’s DNA and expectations for genomic database governance: Results from a national survey. PLoS ONE. doi:10.1371/journal.pone.0229044 (2020) (Epub ahead of print); https://news.psu.edu/story/611073/2020/03/11/research/more-half-americans-want-money-control-exchange-genetic-data