News in Brief

Genome Canada is launching a series of half-day events in Ottawa to facilitate two-way dialogue between researchers and federal policy-makers on the ethical, economic, environmental, legal and social aspects of genomics.

“GPS: Where Genomics, Public Policy and Society Meet” will convene small groups of leading national and international researchers and senior federal policy-makers who are interested in exploring similar issues at the interface of genomics and society, and debating various public policy options for addressing them.

“What this initiative is, essentially, is a knowledge transfer exercise,” says Patricia Kosseim, Chief GE³LS Officer at Genome Canada. “The aim is to encourage GE³LS researchers to synthesize reams and reams of academic papers on a given issue and boil them down to a highly synthesized, five-page policy brief – a format senior policy makers are familiar with – as a tool for supporting their deliberations.”

“At the same time, the idea is also to provide a trusted environment where senior policy-makers can openly discuss the kinds of practical realities they face in dealing with the same issue and the kinds of challenges they need resolved to move forward – all with the goal of informing future research questions.”

This year’s theme is Genetic Information. Three related sub-themes will be explored: Consent, Privacy and Research Biobanks (Fall 2009); Genetic Information and Discrimination (Upcoming 2010); and Online Direct-to-Consumer Genetic Testing (Upcoming 2010).

For its first-year series, Genome Canada is delighted to be working with a group of highly-committed partners, commonly interested in the issue of Genetic Information, and all situated at some point along the knowledge-value chain – somewhere between its generation by researchers and its uptake by policy-makers.

These partners are: The Office of the Privacy Commissioner of Canada; the Canadian Institutes of Health Research; the Council of Canadian Academies; the Public Policy Forum; the Policy Research Initiative of Canada; and Carleton University’s Regulatory Governance Initiative, School of Public Policy and Administration. Representatives from each partner organization have worked diligently with Genome Canada staff over the past few months as Core Advisory Partners, participating in the design and planning of the series.

Core Advisory Partner Kelly VanKoughnet, Vice-President of the Council of Canadian Academies, commented that “the Council of Canadian Academies is pleased to be part of this unique initiative, particularly as the field of genomics is vital for our understanding of human health but application of that knowledge can also raise complex questions. This dialogue series will have significant value in supporting the translation of science in the interest of strengthened policy development. The Council is committed to being at the interface between science and policy and we are confident that the goals set out for this series, and our partnership, are consistent with the Council’s mandate to provide science advice in the public interest.”

“In recognition of the pressing and growing importance of protecting genetic information, our Office has identified genetic privacy as one of four strategic priorities that will help guide our policy, research, public education and investigative work over the next few years,” added Carman Baggaley, a senior strategic policy advisor with the Office of the Privacy Commissioner of Canada and also a Core Advisory Partner. “We are very pleased to be part of this important series of events that will explore the challenges of protecting genetic information. The GE³LS Series will help our Office engage in meaningful debates with key players and decision-makers and also enable us to better define and manage emerging privacy risks in this complex area.”

Sessions will take place three times a year, in Ottawa. Keynote presentations will also be podcast at www.genomecanada.ca/en/ge3ls/policy-portal/podcasts.aspx.

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GPS 2009-10 Series: Events

Consent, Privacy and Research Biobanks (Fall 2009): The collection and study of human tissue are increasingly important for unlocking the full complexity of human health and disease, and effectively addressing global health challenges. Enrolling willing individuals to participate in studies and addressing their reasonable expectations of privacy are equally critical. What are some policy options for delivering on the promise of research biobanks while respecting people’s personal information and building public trust over time?

Genetic Information and Discrimination (Upcoming 2010): As genomics research and technology advance in leaps and bounds, so too do our concepts of personal information and self-identity. Genomic information about your family or community may sometimes lead to unfair assumptions about you; it may reveal things about yourself that you may not want to know or let others know. What are some policy options for maximizing the value of genetic information while protecting against unjust discrimination?

Online Direct-to-Consumer Genetic Testing (Upcoming 2010):The internet has become an infinite repository of information we may access for free or purchase on-line. Our natural curiosity to learn more about ourselves and our connections with others may drive us to ask questions about our personal genome which scientists and health providers may not yet be fully able to answer. Those who wish to keep this information secure may find it challenging to do so in an increasingly networked world. What are some policy options for addressing competing claims for a free marketplace of genetic information on the one hand, and adequate consumer protection on the other?

For more information, please contact Ms. Sheila Chapman, GE³LS Program Manager, Genome Canada, at schapman@genomecanada.ca.

Genome Canada’s online questionnaire was developed by Rose Geransar, a new GE³LS researcher currently completing her PhD at the University of Calgary.

The survey was designed to give an opportunity for new GE³LS researchers to provide ideas for improving networking and communication opportunities. For the purposes of the survey, new researchers were defined as “those with one to five years of academic research experience who are studying the relationship between genomics and society within a range of disciplines, including the social sciences, law, philosophy, bioethics, anthropology, business ethics, commerce, economics, environmental sciences, journalism studies, political science, public policy, etc.”

Last year, Geransar began reflecting on creative ways to foster more networking among her peers.  “I had been thinking more and more about how to create more networking opportunities for those new to the GE³LS community. How do we get them engaged and interested?” she asks.

After approaching Genome Canada and discussing her ideas, Genome Canada decided who better than Rose herself to undertake a systematic approach to answering that very question.

The online survey was disseminated across Canada, with help of the six regional Genome Centres. Sixty-seven (67) new GE³LS researchers responded to the survey (62 in English and 5 in French), which was within the desired range of 50 to 100. The group was split almost evenly between undergrad and grad students. Most were affiliated with one or more of the regional Genome Centres, but about one-third didn’t report being affiliated with any of the Centres, providing feedback from outside of the Genome Canada community of GE³LS researchers.

For Geransar, who has a background in biochemistry, public health and bioethics, one encouraging result was that many respondents indicated training in more than one discipline, across the range of social sciences,  humanities, law, natural sciences and health sciences.

“Even though I am a GE³LS researcher with a science background, I didn’t expect the number to be that high.  It shows that this research area offers a fertile ground for interdisciplinary work,” comments Geransar.

The necessity of networking within the GE³LS community was very strongly acknowledged by respondents.  More than half of all respondents believed networking within the GE³LS community to be “very necessary” to the quality, impact and future of their research, at the regional (61%), national (61%) and international (55%) levels.    Similarly, a large percentage of respondents believed networking with the scientific community to be “very necessary” at the regional (42%), national (43%) and international (48%) levels.  However, despite this, less than one fifth of researchers reported feeling “very well networked” at any of these levels in either the GE³LS or science communities.

“The fact that the vast majority [of survey respondents] feel that networking with the science community is necessary to their research shows that, among other things, they acknowledge the importance of getting the science right,” says Geransar. “People want to see the GE³LS debate be informed by the scientific research – not driven by science, but informed by science, so that it remains a relevant discussion.”

 “Maybe over time this group of new researchers will feel more networked with the science community. It does point to the need to have more levels of engagement, where we have science and GE³LS researchers coming together and sharing each other’s work. More also needs to be done to promote the networking of new GE³LS researchers within the GE³LS community, particularly at the national and international levels.”

 “Ultimately, we’re looking for long-term, sustainable solutions for networking and this survey is a first step.”

A complete report of the survey results will be available on Genome Canada’s GE³LS website. To find out more, contact Sheila Chapman, schapman@genomecanada.ca.

About Rose Geransar

While still an undergrad student at the University of Calgary, Geransar signed on as a research assistant to Edna Einsiedel, communications studies professor at the university and a long-time Genome Canada GE³LS researcher. Since 2003, Geransar has contributed her science savvy to a range of Genome Canada-funded GE³LS projects, from stem cell research policy development and public opinion, to genetically modified food controversies and direct-to-consumer advertising for genetic testing.

Along with analyzing the policies of other countries with national cord blood programs, Geransar is developing more "donor-centric" mechanisms of governance for consent processes that meet the needs of donor parents.

Read Rose Geransar’s profile in the last issue of Impact

At the end of the interview, they were given pen and paper and asked to draw a visual representation of how they perceived the integration of social science and humanities (SSH) research with genomics research.

The drawing exercise was a small, impromptu part of a larger research initiative launched by Genome BC to evaluate the effectiveness of the integrated research funding model.

“Our goal is to better understand the factors that contribute to and detract from successful integration in order to better support integrated projects,” says Dr. Sarah Hartley, Genome BC’s Genomics and Society Advisor, who led the project.

“The drawings really tell a great story of how these various players see integration,” says Hartley. “They tell us a lot, and you can quite clearly see several distinct themes emerge. It was one of the highlights of the project.”

Integrated research projects are social science and humanities projects that operate within larger genome science projects. First introduced by Genome Canada in Competition III in 2005 and in Genome BC’s more recent Applied Genomics Innovation Program (AGIP) in 2007, the integrated funding model stipulates that genomics research projects incorporate a SSH research component to investigate the societal aspects of the science.

“It’s becoming an increasingly popular funding model,” comments Hartley, “but not much research has been done to evaluate its effectiveness. There has been some discussion about the pros and cons of integration, but it’s mostly been anecdotal. With Competition III projects coming to a close, and our AGIP projects about one year in, we felt it was an opportune time to better understand not only the successes of integration, but also the challenges and failures, before people’s memories fade.”

An independent consultant from the company Praxis was hired by Genome BC to conduct one-on-one interviews with over 60 individuals involved in various aspects of integrated research projects – SSH researchers, genomics researchers, peer reviewers, staff members, advisory panel members – to get feedback about their experiences with the model.

“There is no systematic understanding of what’s happening in this model, so we needed to be thorough. Everybody’s voice was heard,” Hartley explains.

“It was an opportunity not to be missed. We’re looking not just at the strengths and weaknesses of the integrated funding model itself, but also comparing how things were done in Comp III and AGIP, so we capture some ‘lessons learned’.”

An interim report will be available in November 2009. The full report, which will include quotes from interviews, is expected to be available in January 2010. Please contact Robin Downey at rdowney@genomebc.ca for more information.