What Are the Main Roadblocks to Transnational Biobank Collaboration,and How Can We Overcome Them?

The question is concise but the answer depends both on the interpretation of the sometimes awkward word “transnational” and on the perspective on two assumptions that underlie the question. I will cover these in turn and then address the question.

What does transnational mean? It means across regions that host groups of people with a unifying government, frequently but not always associated with a specific geographical area. The word therefore applies to biobank collaboration between countries but equally can apply to collaboration across diverse nations (e.g., indigenous peoples), provinces/states/territories, and “distinct societies” that all exist for example within a country such as Canada. Distinct governance for each group is reflected in laws, ethics perspectives, and attitudes that relate to the activities of biobanking. Experience in building collaboration between regional biobanks that exist within or interface with all of these frames my answer.

Are there reasons for biobanks to want to collaborate across regional and/or national borders? Relative to the biobank, there are “internal” reasons to collaborate regionally, nationally, and internationally to share ideas and information on biobank models, processes and operations to build better biobanks. There are also “external” reasons to collaborate to expand the capability of the biobank to support research users to address the same questions on comparable biospecimens, broader questions on a larger scale or narrower questions with a rare focus. These two categories of reasons frame my answer.

Are there roadblocks to overcome at all? Collaborations for internal reasons once faced roadblocks mostly because of the relative isolation of biobanks in the absence of recognition of the discipline, but also because of funding models that created competition. But the growth of national (e.g. CTRNet), and international (p3G) networks, forums (e.g. Marble Arch Working Group), societies and meetings (e.g. ISBER), and a biobanking journal (Biopreservation and Biobanking) has essentially dismantled the first barrier. And the competitive funding models that had some merits a decade ago to stimulate new ideas for biobanks are also a diminishing roadblock, as competitive grant funding for biobanks is so rare in practice. But roadblocks to internal and external collaboration still persist.

So, to address the question. The main roadblock to transnational collaboration to address internal values has changed and is diminished. It is no longer the ability or will to communicate, it is the relatively poor recognition of the value of biobanking which still significantly restricts the effort that is or can be dedicated to biobank leadership, activities, and productive collaboration within our health and research organizations to build these values. The solutions lie in recent efforts to develop tools to classify biobank activities, track intermediate products, and measure overall impact of biobanks. Collaborations between biobanks to address external values face several different and more significant roadblocks. These relate to privacy laws, ethics policies, funding models, and also to practical issues of local medical terminology and definitions and sometimes ownership perceptions fostered by organizations. But among these the most significant are privacy laws. Privacy laws are very important to most of us, but have largely been designed with a focus on issues that are unrelated to medical research, by minds that favor the pendulum swing away from the rights of societies, and have been enacted without sufficient consideration and debate on the collateral damage to other societal objectives such as better health. This roadblock might once have been mitigated by field testing to enable modifications to harmonize these across regions and strategies to be developed to minimize negative impact, but the latter opportunity is long gone and the barrier remains significant and threatens to grow because of the way our political systems function. However the solutions lie in raising these complex issues for balanced and public opinion rather than lobby driven and representative debate, through tools such as deliberative democracy and by establishment of better governance, transparent engagement of donors and education of oversight bodies.