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.

DNA

Image courtesy of dream designs / FreeDigitalPhotos.net

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

Recapping the Top Five Most Viewed Posts of 2013 / Résumé des 5 billets les plus lus de 2013

The Mobilize This! blog had a total of over 17,000 views in 2013. In this post, we recap the top five most viewed blog stories of 2013.

Le blogue Mobilize This! a reçu plus de 17 000 visiteurs en 2013. Revoici les cinq billets qui vous ont le plus intéressés.

#5 with 177 views

Communities of Practice and Communities of Definition / Communautés de pratique et communautés de définition

First published on March 14, 2013

What happens when a diverse group of academics and government staff get together to discuss the role of the knowledge broker in the research to action cycle?  Lots of different opinions of course!  And this is exactly what happened at a recent meeting of the Guelph Knowledge Translation and Transfer (KTT) Community of Practice. But perhaps, the more we differ, the more we might actually have in common.

Que se passe-t-il lorsqu’un groupe hétérogène formé de chercheurs et de travailleurs de la fonction publique se réunit afin de discuter du rôle de courtier de connaissances dans le cycle recherche-action. Un foule d’opinions diverses, évidemment! Et c’est exactement ce qui s’est produit lors d’une récente rencontre de la Communauté de pratique sur le circulation et le transfert des connaissances de Guelph. Peut-être qu’en fait, plus grandes sont les différences, plus le potentiel d’avoir quelque chose en commun est grand.

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I'm a researcher, why do I blog? post#4 with 181 views

I’m a Researcher, Why Do I Blog? / Je suis un chercheur, qu’est-ce que je fais ici à bloguer?

First published on August 7, 2013

This week’s blog post is a guest post from Dr. Will Gage. Dr. Gage is the Associate Dean, Research & Innovation in the Faculty of Health at York University the owner of the blog Don’t Fall, which shares on falls prevention research and expertise.

Le billet de cette semaine est signé par un blogueur invité, le docteur Will Gage. M. Gage est vice-doyen à la recherche et à l’innovation à la Faculté des soins de santé de l’Université York. Son cybercarnet intitulé Don’t Fall aborde des questions de recherche et d’expertise dans le domaine de la prévention des chutes.

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#3 with 200 views

Valorization / Valorisation

First published on January 29, 2013

Valorization is a term that was recently used to describe social innovation. I think it describes what some seek to accomplish in knowledge mobilization quite well. Trouble is the term “valorization” is no easier to understand than the term “knowledge mobilization”.

La valorisation est un terme qui a été utilisé récemment pour décrire l’innovation sociale. Je crois que cela décrit ce que certains tentent d’accomplir par la mobilisation des connaissances également. Le problème est que le terme « valorisation » n’est pas plus facile à comprendre que celui de « mobilisation des connaissances».

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#2 with 232 views

The International School of Research Impact Assessment, Barcelona, September 15-19

First published on May 22, 2013

The International School of Research Impact Assessment was held in Barcelona, Spain, on September 15-19, 2013. Kathryn Graham, a co-organizer of the five day school, shares some information about this exciting event in this guest post.

La première rencontre de « l’École internationale d’évaluation de l’impact de la recherche » a eu lieu à Barcelone, en Espagne, du 15 au 19 septembre 2013. Notre blogueuse invitée, Kathryn Graham, coorganisatrice de l’événement, nous renseigne ici sur cet atelier de cinq jours qui s’est avéré très stimulant.

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Top post of 2013#1 with 476 views

2013 York KMb Learning Events / Les activités d’apprentissage offertes par York MdC en 2013

First published on January 15, 2013

York KMb is offering sessions for researchers, staff and graduate students to help make their research relevant to professional practice and policy development.

York MdC offre des séances de formation à l’attention des professeurs, du personnel et des étudiants gradués afin de les aider à accroître la pertinence de leurs recherches sur le plan de la pratique professionnelle et du développement de politiques.

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Communities of Practice and Communities of Definition / Communautés de pratique et communautés de définition

Bronwynne Wilton* & Anne Bergen**, RIR-University of Guelph

What happens when a diverse group of academics and government staff get together to discuss the role of the knowledge broker in the research to action cycle?  Lots of different opinions of course!  And this is exactly what happened at a recent meeting of the Guelph Knowledge Translation and Transfer (KTT) Community of Practice. But perhaps, the more we differ, the more we might actually have in common.

Que se passe-t-il lorsqu’un groupe hétérogène formé de chercheurs et de travailleurs de la fonction publique se réunit afin de discuter du rôle de courtier de connaissances dans le cycle recherche-action. Un foule d’opinions diverses, évidemment! Et c’est exactement ce qui s’est produit lors d’une récente rencontre de la Communauté de pratique sur le circulation et le transfert des connaissances de Guelph. Peut-être qu’en fait, plus grandes sont les différences, plus le potentiel d’avoir quelque chose en commun est grand.  

A variety of cables and connectors“I see myself as a connector” commented one participant in a recent meeting of the Guelph Knowledge Translation and Transfer (KTT) Community of Practice.  Another saw themselves as a facilitator of researcher-stakeholder collaborations while a third person noted their role as being something of a bridge between high quality information from extensive data sets and the general public.  This cross-section of roles at the first Guelph KTT Community of Practice meeting of the year demonstrates the wide variety of both individuals and perspectives within the emerging field of knowledge mobilization (KMb).

With the starting point of an interesting post on the Knowledge Brokers’ Forum (Lock, 2013) about the roles and identities that knowledge brokers might take on – the Guelph KTT CoP discussion was off to a great start.

Participants’ self-defined roles and professional identities spanned the continuum of KTT/KMb: some work as knowledge brokers, others as knowledge synthesizers and translators, some in technology transfer, some develop and promote toolkits to engage the public and others carry out primary research and wonder about non-traditional forms of knowledge dissemination.

As highlighted in the multiple and often diverse collaborative definitions within the “What is KT” wiki referenced above, within the CoP, the language we use to define our professional identities might reflect where our KTT/KMb work is situated. Moreover, the language we use to define our professional identities may also reflect some of the major barriers to doing that work. The ways in which we practice KTT/KMb, and the ways in which we talk about this work, depends very much on our institutional cultures. People working in the human health and veterinarian science side of KTT, talk about the difficulties of reaching “end users” with synthesized and translated best practices. In contrast, the words “stakeholders” and “research partners” were used more frequently by participants from both the agricultural and social science fields.  This may reflect the increasingly important and necessary process of collaboratively defining a research problem early on in the research cycle.

One of the key topics discussed was the ways in which a knowledge broker might actively engage their audience(s) in the research process to encourage more uptake of research results.  There was general agreement that more effective uptake of knowledge is associated with earlier end-user or stakeholder involvement and engagement, not only in the “results dissemination” phase of research, but throughout the research process.  However, this approach was challenged by a question about when ‘science’ is ready for end-user uptake, whether that be informing policy or affecting practice or programs, and when is there a need to simply inform the next cycle of scientific inquiry on a given topic.  In other words, pivotal questions for many practicing in the KTT/KMb area are “when is the body of knowledge on a given issue robust enough to inform decision-making?” and “who makes that call?”.

These points emphasize the importance of effective knowledge synthesis and translation in the knowledge mobilization process. In terms of our roles as knowledge brokers, do we carry out this synthesis and translation work? Or is this activity one that should be undertaken by the researcher?  It is also worthwhile to acknowledge the concern that any uptake by the media or interest by the general public might result in misrepresentation of the research. Where multiple audiences exist, there may be tensions between tailored messages aimed at the public and those targeted towards specialized practitioners.

Considering the complexity and the multiple dimensions of accelerating the uptake of knowledge from research, we might view the knowledge broker role as both a gatekeeper on the quality of the knowledge to be disseminated, and simultaneously, as a facilitator of relationships between researchers and end-users.  The Guelph KTT CoP discussed the importance of trust and credibility between researchers and stakeholders, and more broadly, with the general public as well.  Understanding and managing expectations among the various partners and audiences in the knowledge creation process was also viewed as a key role for the knowledge broker to play.

The richness of this discussion between such a diverse cross-section of government and academia representatives demonstrates the real value of crossing our institutional, departmental, and disciplinary boundaries to talk about the intersections between knowledge creation and knowledge uptake.   With open minds to share our collective experiences, we can continue to inform and improve our practices in our respective areas of interest.

References

Knowledge Brokering (n.d.). In What is KT Wiki. Retrieved March 4, 2013 from http://whatiskt.wikispaces.com/Knowledge+Brokering

Knowledge Dissemination (n.d.). In What is KT Wiki. Retrieved March 4, 2013 from http://whatiskt.wikispaces.com/Knowledge+Dissemination

Knowledge Synthesis (n.d.). In What is KT Wiki. Retrieved March 4, 2013 from http://whatiskt.wikispaces.com/Knowledge+Synthesis

Knowledge Translation (n.d.). In What is KT Wiki. Retrieved March 4, 2013 from http://whatiskt.wikispaces.com/Knowledge+Translation

Knowledge Transfer (n.d.). In What is KT Wiki. Retrieved March 4, 2013 from http://whatiskt.wikispaces.com/Knowledge+Transfer

Lock, D. (2013, January 7). Professional identities. Message posted to http://www.knowledgebrokersforum.org/wiki/514122

*Bronwynne Wilton is the Manager of the OMAF and MRA- University of Guelph Knowledge Mobilization and Communication Programs for the Office of Research, Strategic Partnerships at the University of Guelph.

**Anne Bergen is the Knowledge Mobilization Coordinator for the College of Social and Applied Sciences and the Institute for Community Engaged Scholarship at the University of Guelph.

Originally posted at http://bit.ly/ZgDRdi  reposted with permission.