Gov't committee says genetic training, interoperability needs more work

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Genetics education and training efforts in the private and public sectors have increased but these efforts have not kept pace with the emerging understanding of the human genome and rapid evolution of genomic technologies, according to a draft report from the Secretary’s Advisory Committee on Genetics, Health and Society (SACGHS) within the Department of Health and Human Services (HHS).

Formed in 2002, SACGHS was chartered as a public forum for deliberation on the range of policy issues raised by the development and use of genetic tests and, as warranted, to provide advice on these issues.

“A significant body of literature from the U.S. and abroad highlights the nature and lack of genetics education of healthcare professionals as factors limiting integration of genetics into healthcare,” the report stated. “Genetic content is often minimal in health education programs, focused primarily on single-gene disorders, and not associated with long-term knowledge retention for clinical application.”

SACGHS also found that these efforts often exist in isolation and are not always linked to accreditation, certification and licensure programs. The advisory committee showcased several barriers, including the failure to update education cuuricula to reflect scientific advancements in genetics and genomics, that impede incorporation of genetics and genomics in patient care.

Another notable barrier is the insufficient number of MD and PhD geneticists available to provide genetics education to healthcare professionals, according to the report. “To address this shortage, others trained in genetics, such as genetic counselors, pharmacists with pharmacogenomic training and nurse geneticists should be encouraged to step into educator roles,” SACGHS recommended.

The committee also found barriers that limit the uptake and appropriate use of genomic and genetic services by public health providers, including a workforce with diverse education and training needs, a significant number of public health workers trained before the genomic era and the lack of an understanding of the need for genetics and genomics expertise in public health practice.

"The federal government and private sector have developed family history tools as one means for individuals and families to gain health literacy and to take a more active role in preventing and managing disease, particulary inherited conditions," stated the report. "These tools tools can help both consumers and healthcare professionals in risk assessment, but for opimal use of this tool, EHRs must be capable of accepting family health history data that have been provided by the consumer."

To address the identified genetics education and training needs, SACGHS made seven recommendations to HHS:

  • HHS should convene a workshop to identify education and training approaches that will promote integration of genetics and genomics into clinical care;
  • HHS should promote the development and implementation of targeted genetic and genomic education and training models for healthcare professionals and public health providers serving underserved and underrepresented groups and populations;
  • Tapping the expertise of its agencies with relevant missions in public health, HHS should assess the workforce to determine the number of public health providers with responsibilities in genetics and genomics to ascertain current trends and future needs;
  • HHS should endorse, fund and maintain an internet entry point or portal to a vetted collection of comprehensive, accessible and trustworthy web-based genetic information and resources for consumers;
  • HHS should support research that identifies methods that are effective for translating genetic and genomic knowledge into information that consumers and patients can use to make health decisions;
  • HHS should support continued efforts to educate healthcare professionals, public health providers and consumers about the importance of family health history; and
  • Increase incentives and encourage investment by public and private organizations in education and training in genetics and genomics and increase willingness of healthcare professionals to participate in educational programs.

The draft report is available for public comment until June 30.