Clinical Genetics Research Workshop

INSTITUTE OF GENETICS
CANADIAN INSTITUTES OF HEALTH RESEARCH

Clinical Genetics Research Workshop

Toronto, Ontario

REPORT OF THE PROCEEDINGS
August 19-20, 2001

WELCOME AND INTRODUCTION

The Clinical Genetics Research Workshop was sponsored by the Institute of Genetics (IG), of the Canadian Institutes of Health Research (CIHR). This two-day strategic planning workshop was held in Toronto at the Royal Meridian King Edward Hotel, August 19-20, 2001. Approximately 38 participants with diverse backgrounds and involvement in clinical genetics research were invited to attend the workshop. Participants were selected to ensure broad representation from all the sectors with an interest in clinical genetics research (CGR), including clinical and medical genetics, basic science, social science, and representatives of voluntary organizations, while taking into account geographical representation.

Rosanna Weksberg, Co-Chair of the IG Priority and Planning Committee on Clinical Genetics Research, welcomed participants to the workshop and outlined the workshop's overall objectives, namely (a) to determine how to enhance CGR in Canada, and (b) to determine how the IG can facilitate increased productivity in this area. Rod McInnes, Scientific Director, Institute of Genetics, followed up with a brief update on CIHR and conveyed his expectations for the potential workshop outcomes. These included defining the goals of the IG for Clinical Genetics Research over the next five years, and to identify mechanisms to achieve these goals.

The purpose of this workshop was to provide the opportunity for the Institute of Genetics and representatives from the field of Clinical Genetics Research to develop a framework for advancing CGR in Canada. To accomplish this, workshop participants examined the challenges and critical issues related to the field, and explored the prospect of establishing a national Clinical Genetics Research Network. The workshop was organized into several sections that included round table discussions, panel presentations and small breakout group discussions, in order to fulfill the following specific objectives:

To get a better understanding of the current state of CGR in Canada;
To identify opportunities, mechanisms and future strategies that will increase the productivity and impact of CGR;
To identify potential challenges that must be overcome to achieve greater productivity;
To provide the Institute of Genetics with guidance regarding the nature of funding programs that will build capacity in CGR.

WHAT IS CLINICAL RESEARCH?

Jane Evans, Co-Chair of the IG Priority and Planning Committee on Clinical Genetics Research, opened with a presentation addressing this question and provided an overview of the recent published literature in the area. To properly ascertain and characterize CGR in Canada, it was recommended that a national database of what is being accomplished in the field be established Analysis of this database would then reveal areas of research strengths, opportunities for collaboration, and areas of CGR that are currently under-represented at the national level. The wealth of information stored in this database would also significantly contribute to the development of Clinical Genetics Research Centres. It was concluded that these Centres have the potential to act as a hub to increase human resource capacity in CGR, by attracting a broad range of researchers to the field.

THE CONCEPT OF CLINICAL GENETICS RESEARCH CENTRES

Clinical research centers are seen as one mechanism of increasing the impact and productivity of CGR. Workshop participants were encouraged to think broadly about the concept, the type of groups that should participate in these centers, the core activities and functions, as well as the infrastructure that would be required to support these entities.

Group discussions ensued where workshop participants examined the critical issues related to clinical genetics research and clinical genetics research centres, in addition to, potential mechanisms for building human resource capacity in CGR.

The first discussion group concluded with proposing a "patient to research to patient" vision, together with exercising flexibility in responding to the ever-changing environment and opportunities in the field; as overarching principles for the clinical genetics research centres. Group discussions on augmenting clinical geneticist capacity, concluded with providing opportunities to increase the visibility of the specialty during training, through initiatives such as: (a) establishing summer camps for undergraduate students, (b) initiating changes to the undergraduate medical curricula in order to enhance the profile of the specialty, (c) sharing of new teaching ideas and curricula among medical schools, and (d) establishing CIHR clinical genetics fellowships. The group proposed that a key strategy for rapidly generating this critical mass was to ensure that all of these opportunities are available to cytogeneticists, molecular, clinical, and biochemical geneticists, as well as other specialists.

MODELS OF CLINICAL GENETICS RESEARCH CENTERS

To provide further opportunity to refine these concepts, a panel presentation was organized to explore several models of clinical genetics research centres. The first panelist, Dr. Stephen Meyn, presented four different models of clinical research centres that currently exist in the United States and in Iceland. Their mission, infrastructure, population base and funding model was critically examined for the purpose of implementing a similar model for CGR in Canada.

The second panelist, Dr. David Rosenblatt, focused on critical issues related to the implementation of successful Clinical Genetics Research Centers. Executing the following criteria was recommended: (a) engage well-trained principal investigators with a proven track record of research; (b) ensure principal investigators have salary support and/or protected time for research; and (c) devise a multi-site or distributed network model.

The final panelist, Dr. Sylvie Langlois, described a unique clinical research model funded by the FRSQ in Quebec. The focus of this model is on developing the network and infrastructure necessary to the development of successful teams of clinical research excellence. The ability to facilitate capacity building was seen as a further benefit of the network by equipping trainees with a mechanism to collaborate with experts, and more importantly, providing them with access to seed funding to encourage the development of their own small pilot projects.

While the concept of several independent, clinical research centers located strategically across the country had also been considered amongst the models, the concept of a single, national CGR Network with multiple nodes of focused excellence, appeared to be well received by most workshop participants.

PRIORITIES FOR CLINICAL GENETICS RESEARCH

The workshop closed with a discussion of priorities for CGR, with a view to meeting the key objective of increasing the productivity and impact of CGR in Canada. Rod McInnes facilitated the final session in which he sought input from the workshop participants with regards to setting overall IG priorities for CGR and reviewed the structure of the Institute's budget.

Workshop participants identified the following six priorities:

Establish a national CGR Network and identify a leader;
Identify research priorities;
Facilitate research priorities through appropriate infrastructure, including databases, biostatistical support, study design, human resources, ethics and legal expertise;
Determine the mechanisms for identifying and fostering key partnerships;
Attract the best people and provide the necessary training in CGR;
Facilitate ongoing networking and communication initiatives.

The meeting adjourned with Rod McInnes thanking all of the participants for their incredible energy and innovative thinking over the two days. He thanked the committee co-chairs, Rosanna Weksberg and Jane Evans as well as the Organizing Committee for their skillful planning and coordination that led to an extremely productive meeting.

SUMMARY OF RECOMMENDATIONS

Build a national, high quality, research priority-driven database and identify partners/stakeholders with an interest in establishing this database.
Establish research priorities first, then develop databases to support the research.
Establish a coordinating ethics body as an essential component of the CGR network with a requirement to coordinate with local research ethics boards via annual meetings, and regular communications;
Establish a core CGR training curriculum that could be used across the country.
Devise a mechanism to locate potential partnerships and foster collaboration in order to raise the profile of CGR.

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