Finding suitable academic biobanks can be quite challenging for industry researchers. To begin with, the biobank must possess the necessary clinical samples. Additionally, it must have biobank access policies that permit industry collaboration. Unfortunately, many biobanks have restrictive biospecimen access policies that either limit or outright prevent industry collaboration. Moreover, some biobanks impose conditions that companies find unacceptable, while others fail to make their access policies publicly available.
Biobank Access Policies
Biobank access policies often reflect the core values and priorities of a biobank’s leadership. As Catchpoole (2015) noted:
“Motivation can be captured in policy which sets boundaries of practice of the biobank and reflects the core values of the different authorities, community groups, and stakeholders who consider it a ‘biobank.'” (J Health Serv Res Policy. 2015;21:140–142).
In most cases, institutional biobank policies are shaped by senior representatives, typically academics and research-focused clinicians. The staff responsible for handling biospecimen access requests must follow the rules set by the biospecimen access policies.
Conditions for Accessing Biospecimens
In some instances, biobanks require requesting companies to collaborate with their institution as a condition for access. However, many companies are unwilling to accept these conditions due to concerns about intellectual property rights and other issues related to biospecimen access.
This brings us to an important point: the development of life-saving drugs and diagnostics by the industry heavily depends on access to biosamples from public-sector biobanks. Without this biospecimen access, what alternatives are available for the industry, and are these alternatives ethically acceptable?
Transparency in Access Policies
A study by Langhof et al. (2017) surveyed 523 biobank websites and found that only 9% made their access policies publicly available. The authors emphasized the importance of transparency:
“The lack of publicly available biobank access policies not only contradicts the obligation of stewardship but could also reduce public trust, willingness to donate samples, and public funding. Biobanks should have meaningful access policies and make them publicly accessible.”
Additionally, the study found that out of the 74 access policies reviewed, 16 specifically prohibited industry access. This was the most common exclusion criterion in these biospecimen access policies.
Conclusions
In conclusion, transparency in biobank access policies is essential for maintaining public trust. Since biobanks rely heavily on public support to build their biospecimen collections, it is only fair that the public is informed about how their donated samples are shared and used.
Moreover, clear and accessible biospecimen access policies benefit industry researchers by outlining eligibility requirements, preventing wasted time on unsuccessful applications. To encourage greater transparency, Langhof et al. (2017) recommend:
“Infrastructures such as BBMRI-ERIC and P3G could require biobank access policies as a prerequisite for listing in their registries. Likewise, public funders could require, not just recommend, publicly available access policies with at least some level of external access.”
References
- Catchpoole D. ‘Biohoarding’: treasures not seen, stories not told. Journal of Health Services Research & Policy. 2016;21(2):140-142. doi:10.1177/1355819615599014
- Langhof, H., Kahrass, H., Sievers, S., et al. Access policies in biobank research: what criteria do they include and how publicly available are they? A cross-sectional study. Eur J Hum Genet 25, 293–300 (2017). https://doi.org/10.1038/ejhg.2016.172
Other posts on this Biosample Hub blog include:
- Why Academic / Hospital Biobanks Should Provide Biosamples to Industry
- Ensuring Public Support For Biobank Cooperation With Industry
- The Main Actors Providing Biosamples To Industry
- Biosample Needs of Different Industry Players
- Acceptable Transactions in Biobanking
- What is Commodification?
- Why Biobank Access Policies Should Be Publicly Available
- Biospecimen Provenance: What Researchers Need To Know
