The perceived risks of sharing genomic data with researchers

22 Jul 2025

In this GA4GH Public Attitudes for Genomic Policy forum blog post, Dr. Richard Karlsson Linnér writes about his recent study, investigating the willingness of a sample of people in Dutch and German households to share their genomic data, based on levels of trust in scientific researchers, data security, and the safeguarding of personal information.

By Dr. Richard Karlsson Linnér (Universiteit Leiden, Netherlands)

Experts anticipate that disease risk prediction from genetic data will play a central role in the future of disease screening programmes and precision medicine. The accuracy of predicting a person’s disease risk from their genetic sequence has improved considerably in recent years, but there is still a long way to go before this technology can be considered for most common diseases and for people of all backgrounds. Continued growth in the number, size, and diversity of genetic research datasets and biobanks is crucial to achieving broad clinical utility. Such growth depends strongly on whether the public is willing to entrust researchers with sensitive genomic data. The efforts of the Global Alliance for Genomics and Health (GA4GH) Public Attitudes for Genomic Policy forum have been seminal in advancing our understanding of global attitudes toward the sharing of genomic and health data in different settings.

In a recently published study, Richard Karlsson Linnér and Manisha Jain (University of Wisconsin-Madison) further advance this line of research by investigating the decision to share one’s genetic data in support of scientific research in the intersection between the social sciences and health research¹. The main analysis studied the stated willingness in a nationally representative sample of Dutch households, and the main results were followed-up in a representative sample of German households. The central finding is that the overall willingness to share genetic data with researchers is modest (about 50 to 60%). Modest willingness may become a serious issue for the growth and unbiasedness of genetic research datasets, especially when it comes to encouraging the participation of already underrepresented social groups or other characteristics. 

The study revealed that the people who report a higher willingness to take risks were substantially more willing to share their genetic data, followed by those with the opinion that the government should be permitted to store the DNA of its population. These factors can lead to volunteer bias, which hampers the generalisability of research findings. Furthermore, the study found nuances about the risks perceived by the participants, which were focused on a variety of risks related to data breaches and privacy violations, from researchers, the government or other authorities, or commercial interests (e.g. insurance companies or marketing). 

The results made it clear that much work remains to address the risks perceived by respondents, which the study found could not be offset simply by offering a higher financial incentive for participation. Instead, the researchers propose additional measures to improve data security, recruitment, and communication materials, as well as the establishment of insurance schemes that would pay compensation in the unlikely, but possible, event that data falls into the wrong hands. The authors propose that more research is needed to investigate whether different types of insurance schemes could be successful in improving the participation rate. Considerable work remains to understand the specific risks perceived by underrepresented groups, whose attitudes and concerns are already difficult to survey (perhaps because of the risks specific to them or minorities in general).

Notably, about a month before the publication of the study, a market leader in consumer genetic testing filed for bankruptcy, raising a range of questions about the fate of the genetic data from millions of people stored in its system. The trust in this company had already been harmed by a data breach in 2023. Fortunately, the US judicial system did not permit a fire sale to the highest bidder. Instead, the sale was overseen by various consumer protection institutions (e.g. an ombudsman and the state attorney general). These events serve as lessons for the research community, as it is not impossible for institutes that collect and host genetic research datasets to run out of funding, which may increase the likelihood of a disorderly discontinuation of these datasets. 

The actions of public institutions, researchers, and commercial entities all play key roles in building and maintaining trust. Trust takes time to build, but can be lost in an instant. The more protected the public feels in the safeguarding of their sensitive personal information, the more likely they will be to share genomic data with researchers in the future. This trust is essential for the continued growth of the genetic research datasets and biobanks required for further advances in genomic risk prediction and precision medicine.

Infographic:

References:

1. Karlsson Linnér, R. and Jain, M. (2025), “The risks cannot be compensated”: The willingness to donate DNA for science and its relationship with economic preferences. Canadian Journal of Economics/Revue canadienne d’économique, 58: 515-547. https://doi.org/10.1111/caje.70008

Disclosures:

The author declares having no conflict or financial interest related to this document.

The text was written by the author and then grammar checked by Copilot/GPT-4.1.

The infographic text was written by the author. The infographic layout, background colors, and symbols were drafted by GPT-4.o.

Applicable license: CC BY 4.0.