Knowledge mobilization or knowledge stewardship? The ethically complex research world of biobanks / « Mobilisation » ou « intendance » des connaissances? La complexité éthique de la recherche pour les biobanques
Anne Bergen1, Kieran O’Doherty2, and Bronwynne Wilton3, University of Guelph
This blog post was originally published on the Agri-Food and Rural Link blog on February 18, 2014 and is reposted here with permission.
Ce billet a été publié sur le blogue Agri-Food and Rural Link le 18 février 2014. Il est repris ici avec la permission des auteures.
As practitioners in the field of knowledge mobilization, we tend to work from the value assumption that research knowledge should be shared. And that knowledge should be shared as openly and freely as possible. But what happens when researchers are working with genetically identifiable human tissue samples stored in biobanks?
On January 24, 2014, the Guelph Knowledge Translation and Transfer (KTT) Community of Practice set out to explore this very question. Dr. Kieran O’Doherty from the Department of Psychology at the University of Guelph walked the group through an eye-opening and informative presentation about the social and ethical implications of biobanks with regards to knowledge translation and transfer.
In the KTT field, we try to move information into active service as evidence-informed practice and policy. We also try to move community-level information and knowledge to inform research questions and directions. From a societal or ethical standpoint we can also see that some information is not always suitable for mobilization or dissemination – for example, identifiable information that violates research participants’ rights to privacy. The tensions between privacy and open data are particularly clear in the case of biobanks.
Genetic material is inherently identifiable – linked to each of us through DNA code. Biobanks of human tissue are collections that may be used for research as well as other purposes (e.g., criminal investigations). That is, biobanks allow researchers access to genetic material for research purposes, circumventing the need to recruit human participants. Although some biobanks have existed for decades, the combination of advances in genomics and bioinformatics are opening up new avenues for research and health care, yielding genomic knowledge at both the individual and the sub-population or population level.
For the most part, research ethics policies have struggled to keep up with these advances. Current frameworks may both impede effective biobank operation and at the same time lack adequate protection for research participants. How would researchers ensure that there is informed consent for future and unknown use of a tissue sample? But how realistic is it to re-contact donors before each research project? Especially when samples collected may continue to be used decades after the original collection point?
Biobanks invoke a lot of difficult questions. A research project may incidentally discover that the donor of a particular tissue sample is at risk of disease. Would you want to be told if you are at risk? Would you be willing to keep your name associated with your tissue sample if you could be informed about such risks? What if that information was also shared with employers or insurance companies or linked to your health records? Do you retain ownership of tissue that you donate? What if the tissue is used in a discovery that makes a lot of money?
One concept that the Guelph KTT CoP group discussed that seemed to resonate with both the ethical challenges of research associated with biobanks and with the knowledge mobilization questions raised about this type of research was the notion of stewardship. By developing and maintaining carefully thought out stewardship plans for the genetic materials contained within the biobanks, the research and data management protocols, and the subsequent KTT activities coming out of the research, biobanks can play an important role in life science research. The word stewardship, by its definition, implies the responsible and careful management of something entrusted to your care (Merriam-Webster, n.d.). There are no single answers to the question that this discussion raised. But the dialogue and discussion of these issues as a society is essential as biobanks are an important part of our research futures. Mobilizing and stewarding knowledge, one genetic marker at a time.
1. Dr. Anne Bergen is the Knowledge Mobilization Coordinator for the College of Social and Applied Human Sciences and the Institute for Community Engaged Scholarship at the University of Guelph
2. Dr. Kieran O-Doherty is an Assistant Professor, Applied Social Psychology, in the Department of Psychology, University of Guelph
3. Dr. Bronwynne Wilton is the Manager, Knowledge Mobilization and Communication Programs in the Office of Research, Strategic Partnerships at the University of Guelph