The Health Services for Genetic Diseases Initiative grew out of a shared concern between the CIHR Institute of Genetics (IG) and the CIHR Institute of Health Services and Policy Research (IHSPR) that rapid growth in genetic technologies and understandings required corollary developments in health services and policy research to ensure that genetic health care could be organized, regulated, managed, financed, funded, used and delivered in the interest of improving the health and quality of life of all Canadians. Only four years ago there were few Canadian investigators doing research in this field, with virtually no cross-talk between the health services/policy research and genetics communities. By 2005, a strong new cross-disciplinary, collaborative research community had taken root and is now actively working with policy-makers and system managers to address issues of rapidly increasing importance to our health care system. Since 2003, approximately $5.2 million has been invested in this initiative by the IG, IHSPR and partners: Canadian Coordinating Office of Health Technology Assessment, CIHR Institute of Population and Public Health, CIHR Knowledge Translation Branch and the Heart and Stroke Foundation of Canada.

In the fall of 2006, the IG and IHSPR held a consultative workshop that sought input from the community regarding the future directions of the Health Services for Genetic Diseases Initiative. This consultative workshop identified the following four research priority areas:

• Models of service delivery. There is a need to understand the ways in which genetic services are currently delivered to Canadians, to evaluate alternate models for the delivery of these services, and to consider how genetic services can best be developed to address new and emerging genetic technologies and services. Thus, this initiative calls for research to describe and assess models of service delivery, taking into account what exists, what works, how change can be managed, and outcomes assessed. This could include exercises to map models of service delivery across the country and evaluations of the relative effectiveness (or cost-effectiveness) of different models for delivering genetic health services, including considerations such as the mix of health care professionals, alternative clinical approaches to delivery, whether services should be centralized or regionalized, the role of the private sector, or how to ensure equitable accessibility for Canadians of different geographic, cultural or ethnic origins.
  
  
  
• Genetics in primary care. As genetic science and technology expand the scope for genetic medicine and raise the public profile of genetic issues, primary care providers are expected to play an increasingly important role in the triaging and provision of genetic services. Thus, this initiative calls for focused attention to the role of primary care providers in genetic health care, including family history taking, referral guidelines and tools, the roles (and availability) of various primary care providers (including family physicians, genetic counsellors, genetic nurses, etc.), and the relative effectiveness of different ways of empowering primary care providers to assess and appropriately integrate genetic services into their practices.
  
  
• Assessing new and emerging genetic technologies. There is a continued need to develop evidence to support decision-makers in the assessment of new and emerging genetic technologies. Thus, this initiative calls for research to enhance our understanding of the cost effectiveness and utility of genetic tests, technologies, products or services, and to develop (and evaluate) ways to address the needs of policy makers for timely access to various sources of evidence and to support decisions (including the use of decision frameworks and tools) regarding which genetic health services should be provided, by whom, in what settings, and how they should be financed.
  
  
• Public engagement and education. There is a need to engage various 'publics' (lay, professional, provider, policy maker, etc.) regarding the meaning, utility, acceptability and desirability of existing and emerging genetic technologies, taking into account limitations in scientific knowledge, and sometimes-inflated expectations about scientific potentials. Thus, this initiative encourages research to gauge the attitudes of various publics, and evaluate approaches to engagement and education that empower citizens, consumers and providers, and inform policy makers.

In support of research and research capacity building in these research priority areas, the IG and IHSPR are pleased to announce the launching of three funding opportunities:

June 2007:

• Emerging Team Grant: Applied Health Services and Policy Research
• Operating Grant: Health Services for Genetic Diseases

December 2007:

• Research Synthesis Grants (To Be Announced in December 2007)

To view these opportunities, use the new CIHR Funding Opportunity Database and select the appropriate opportunity from the list which is sorted alphabetically.

Should you have any questions about the IG & IHSPR Health Services for Genetic Diseases Strategic Initiative, please contact:

Stephanie Robertson
Assistant Director, Ottawa
Institute of Genetics
Canadian Institutes of Health Research
(T): 613-954-0533
(F): 613-954-1800
(E): srobertson@cihr-irsc.gc.ca