Genetics Education and Training

Genetics Education and Training

Report of the Secretary's Advisory Committee on Genetics, Health, and Society

February 2011

A PDF version of this report is available at .

Secretary's Advisory Committee on Genetics, Health, and Society 6705 Rockledge Drive Suite 750, MSC 7985 Bethesda, MD 20892-7985 301-496-9838 (Phone) 301-496-9839 (Fax)

February 1, 2011

The Honorable Kathleen Sebelius Secretary of Health and Human Services 200 Independence Avenue, SW Washington, DC 20201

Dear Secretary Sebelius:

In keeping with its mandate to provide advice on a broad range of policy issues raised by the development and use of genetic technologies, the Secretary`s Advisory Committee on Genetics, Health, and Society (SACGHS) has prepared the report Genetics Education and Training. The report describes the genetics education and training needs of point-of-care health professionals, the public health workforce, and patients and consumers and provides six recommendations to address these needs. Implementation of these recommendations would advance access to and use of beneficial genetic information and services by ensuring that clinical and public health professionals and the public have the educational tools and resources to understand, interpret, and appropriately apply such information.

The report is the culmination of 3 years of factfinding, public consultation, analysis, and deliberation by the Committee. In conducting its work, SACGHS used the following methods: (1) a review of published and unpublished research relevant to professional and public education and training in genetics; and (2) surveys of selected health professional organizations and individuals with responsibilities across the continuum of health professional education and public health; and (3) interviews with experts in genetics education and advocacy outreach.

The six recommendations provided in the report urge the Department of Health and Human Services (HHS) to take the following steps to improve genetics education and training, which will help assure the appropriate, effective, and efficient integration of genetic and genomic technologies and services into the health system and equitable access to those technologies and services:

Convene a task force to identify innovative approaches to prepare health professionals for the genomic age and mechanisms to assure the incorporation of genetic content in

electronic health records, credentialing exams, accreditation of institutions, and continuing education activities

Evaluate the composition of the public health workforce to identify future education and training needs of those with responsibilities related to genetics and fund the development and implementation of programs that address these needs

Support programs that increase the diversity and genetic competencies of the health care workforce in underserved communities and ensure that consumer and patient educational materials are culturally and linguistically tailored to the unique needs of the community

Identify effective communication strategies for translating genetic knowledge into information that consumers and patients can use to make health decisions and develop educational programs that use a wide array of media and community-based learning

Create and maintain a state-of-the art Internet portal to facilitate access to comprehensive, accessible, and trustworthy web-based genetic information and resources for consumers

Improve and promote the use of family history tools

Since the SACGHS charter ends February 28, 2011, responsibility for monitoring the implementation of these recommendations should be assumed by relevant HHS agencies such as the Agency for Healthcare Research and Quality, Centers for Disease Control and Prevention, and the National Institutes of Health and steps taken to formulate and track success measures of any programs instituted or funded as a result of these recommendations. The Committee also proposes that the state of genetics education and training be assessed within 5 years to ensure that Federal efforts continue to reflect the diverse and unique needs of health care and public health professionals and the public.

SACGHS has appreciated the opportunity to be of service to you and hopes that its final report Genetics Education and Training will prove helpful to you and the Department.

Sincerely,

Steven Teutsch, M.D., M.P.H. Chair, SACGHS

About SACGHS

The Secretary`s Advisory Committee on Genetics, Health, and Society (SACGHS) was first chartered in 2002 by the Secretary of Health and Human Services (HHS) as a public forum for deliberation on the broad range of policy issues raised by the development and use of genetic tests and, as warranted, to provide advice on these issues. The charter set out the following specific functions of the Committee:

Assessing how genetic and genomic technologies are being integrated into health care and public health; Studying the clinical, public health, ethical, economic, legal, and societal implications of genetic and genomic technologies and applications; Identifying opportunities and gaps in research and in data collection and analysis efforts; Examining the impact of current patent policy and licensing practices on access to genetic and genomic technologies; Analyzing uses of genetic information in education, employment, insurance, and law; and Serving as a public forum for discussion of issues raised by genetic and genomic technologies.

SACGHS held its last meeting in October 2010. Based on the Committee`s accomplishments in addressing all the major areas outlined in its charter, SACGHS will sunset February 28, 2011. Over its tenure, the Committee provided advice on a range of complex issues raised by new technological developments in human genetics and produced a body of work that will provide a lasting framework for addressing new developments in the ongoing integration of genetics into clinical practice and public health.

Structurally, SACGHS consisted of up to 17 individuals from around the Nation who have expertise in disciplines relevant to genetics and genetic technologies. These disciplines included biomedical sciences, human genetics, health care delivery, evidence-based practice, public health, bioinformatics, behavioral sciences, social sciences, health services research, health policy, health disparities, ethics, economics, law, health care financing, consumer issues, and other relevant fields. At least two of the members are specifically selected for their knowledge of consumer issues and concerns and the views and perspectives of the general public.

Throughout the course of the Committee`s work, representatives of at least 19 Federal departments or agencies also participated in SACGHS in an ex officio (nonvoting) capacity. The departments were the Department of Commerce, Department of Defense, Department of Education, Department of Energy, Department of Justice, Department of Labor, Department of Veterans Affairs, Equal Employment Opportunity Commission, Federal Trade Commission, and the following HHS agencies: Administration for Children and Families, Agency for Healthcare Research and Quality, Centers for Disease Control and Prevention, Centers for Medicare &

Report of the Secretary`s Advisory Committee on Genetics, Health, and Society

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