5
Dec2016

Educate Those Who Donate

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On the first day of AER16 in sunny, warm Anaheim, I attended the Biobanking in an Era of Research towards Precision Medicine pre-conference program. The course  examined the contemporary challenges of biobanking— among them, obtaining meaningful consent, ownership of shared biospecimens and return of research results—and focused on practical strategies for addressing them.

As the well-qualified presenters led us through the agenda, they provided clear, comprehensive guidance on the regulatory considerations, examples of cases and best practices, and recent developments. Coming from an institution that has many biobanks and is one of the recruitment sites for the NIH Precision Medicine Initiative, All of Us, I am well-versed in biobanking issues. However, those issues are myriad and complex, with significant differences in opinion among stakeholders about core issues; I know that I can always learn more from colleagues who are also trying to navigate them.

This preconference course focused on All of Us, a biobanking initiative which proposes to recruit one million participants in a five-year period. Given technological advancements that permit rapid sharing of data, biospecimens, and generations of extensive genetic information, this and similar recent initiatives have brought increased attention to biobanking. This is not to say that biobanks are new—they certainly are not—but the manner in which they have been managed and regarded as research initiatives differs widely. Some institutions have a relatively long history of robust infrastructure for their biobanks, but many others have addressed them on an ad hoc basis at best.

Researchers, research administrators, regulators, and sponsors need to understand the importance of appropriate management of biobanks and the related regulatory and ethical issues, and work together to find responsible and feasible solutions. Resources such as the slides from this preconference and the references cited within them can guide discussion and eventually contribute to the development or enhancement of infrastructure at attendees’ home institutions and upwards to regulators and sponsors.

It was clear, however, in discussions in this program that education cannot stop there. Institutions are not the only, nor the most important, stakeholders in this era of biobanking for precision medicine; participants must be considered equal partners. They will be asked to provide biospecimens and personal data that will be stored for many years and used by multiple researchers. For most, there will be no direct benefit. For some, research findings may significantly impact their lives.

Educating the general public about the basics of research and the potential value of their participation seems to be a logical first step towards increasing enrollment rates by (a) engaging them in the research process, (b) providing tools for making an informed decision, and (c) balancing concerns about privacy, confidentiality and long-term shared use of data and biospecimens. It would take time, but creative and effective use of social media could accelerate the process. To consider: lacking efforts on a federal level, could this perhaps be a worthwhile initiative for institutions and advocacy groups to tackle? The success of initiatives such as All of Us may hang in the balance.

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  1. Pingback: Educate Those Who Donate - Bioethics Research Library