Data Sharing: The Impact of Commercialization on Public Trust

Collaboration is important for the advancement of medical research, which requires large, heterogeneous sample pools with attached supplementary data. It also plays a significant role in biobank sustainability, since proper funding and enhanced efficiency directly affect viability. Data sharing is key for both goals.

Current findings indicate that in order for potential donors to set aside privacy and future-use concerns for scientific benefit, a biobank must inspire a high level of trust—and when it comes to data sharing, this extends to the institutions with whom the biobank collaborates.¹ In particular, collaborative activities involving commercialization, including partnering with private, for-profit entities and the development of commercial products, may erode public trust in biobanks.

For this reason, Critchley et al. (2015) examined public response to data sharing, focusing on five variables in two categories: biobank type (public versus private) and access status (public versus private, local versus international, no sharing).¹ They also assessed the impact of funding sourcing and observed differences related to demographics.

To do this, the team asked a group of 1,701 Australians to respond to scenarios that explored combinations of biobank type and access status:

• public biobank that allows no access

• private biobank that allows no access

• public biobank that allows access only to local public entities

• public biobank that allows access to both local public and private entities

• private biobank that allows access to both local public and private entities

• public biobank that allows access only to international public entities

• public biobank that allows access to both international public and private entities

• private biobank that allows access to both international public and private entities

Two additional scenarios addressed funding:

• public biobank that allows no access and receives almost all of its funding from public sources (public condition)

• public biobank that allows no access and receives almost all of its funding from private sources (private condition)

Each participant rated his or her likelihood to trust the biobank (as well as its researchers and regulations) in the given scenario, participate in its research, and allow the biobank to link the participant’s biospecimen with his or her medical records.

Overall, respondents were significantly more likely to trust biobanks, participate in research and link records for public biobanks over private ones. When it came to access status, respondents were significantly more likely to participate for biobanks that allowed no access over those that allowed international or local access. However, the researchers observed no significant reduction in intention to participate between international and local access. This indicates that while respondents strongly preferred no access, location access status had no strong impact.

For commercialization access status, respondents were significantly less likely to trust a public biobank and participate in research if the biobank allowed access to private entities. On the other hand, there was no decrease in trust or intention to participate when the same public biobank restricted access to public researchers. Access status did not affect a respondent’s likelihood to link samples to medical records or trust researchers and regulations. Finally, respondents were more likely to trust biobanks, participate in research and link records if the biobank used public funding sources, but these results were not statistically significant (although they might approach significance with a larger sample set).

Using computational modeling, the team determined that reduced likelihood to participate in private biobanks was an absolute function of lower overall trust in private researchers, regulations and biobanks as a whole. The respondents who were more likely to allow linked medical records tended to be those who indicated higher trust in the biobank in general and who did not possess a university education. They further found an enhanced likelihood to trust public biobanks in university-educated respondents as well as those with previous experience with the term “genetic database” and/or who knew someone—either a close friend or relative—with a genetic illness.

Critchley et al. acknowledge potential concern over the finding that most respondents indicated decreased trust in biobanks that engaged in data sharing. This finding could affect biobanks in terms of scientific utility and the sustainability of the repositories.

They offer the following hopeful observations:

• When it came to the more trusted public biobanks, respondents found data sharing with other public researchers acceptable.

• Respondents with previous conceptual knowledge of genetic databases were less concerned about data sharing.

• Respondents with previous experience with biobanking as a concept were more likely to trust public biobanks who shared data, even with private entities.

These observations suggest raising public awareness regarding the importance of resource and data sharing for the advancement of medical research could positively influence public trust, even in the case of commercial data sharing. The team suggests further research into whether increasing public awareness of biobank sustainability issues could elicit a similar response.

Reference

1. Critchley, C., et al. (2015) “The impact of commercialisation and genetic data sharing arrangements on public trust and the intention to participate in biobank research,” Public Health Genomics, 18 (pp. 160–172), doi: 10.1159/000375441.