By Matt Jones
NEW YORK (GenomeWeb News) – A US Department of Health and Human Services committee said in a new report that steps should be taken to help the US healthcare system prepare for the arrival of widespread clinical genome-based medicine, including addressing a lack of knowledge among doctors, public health professionals, and patients.
The Secretary's Advisory Committee on Genetics Health and Society conducted a review of the levels of awareness and knowledge of genomic and genetic medical tools among these three groups, and found several areas where education and training are needed.
The study conducted by the committee's task force on education and training found that the "list of players who will be involved in genomics is growing rapidly … [and] now includes pharmacists, dentists, laboratorians, and public health administrators," Barbara Burns McGrath, the task force's leader and an associate professor at the University of Washington's School of Nursing, told GenomeWeb Daily News.
SACGHS said in the report that in its review of the three central groups on which it focused it found that inadequate education among health care professionals about genomic technologies and advances is a significant limitation for the integration of genetics into clinical care.
Health care providers, in general, are very busy, and are expected to learn new things about fields that are constantly changing. The task force aimed to find ways to ensure that they are getting the most up-to-date genetics education and training.
Public health providers also are not well prepared to receive and assimilate genetic and genomic information, and there are multifaceted barriers toward achieving a more genomics-informed public health workforce, SACGHS found.
Among consumers and patients, the committee found, there is an underlying need to improve genetic literacy in the formative years and throughout their lifespan. The committee's research found that consumers understand that there is a relationship between genetics and health outcomes, but they generally do not understand complex traits or the contribution genes can make in common diseases, or how genetic information could be used to optimize health. However limited their understanding of genetics, consumers have been supportive of using it to improve disease diagnosis and prevention, the committee found.
In its final report, released after it officially disbanded when its charter expired in February, SACGHS identified six initial steps HHS should consider taking to address these problems and to improve genetics education and training.
HHS should convene a task force to identify approaches to prepare health professionals, including physicians and nurses, for the genomic age and mechanisms to assure the incorporation of genetics content in electronic health records, credentialing exams, accreditation of institutions, and continuing education activities, SACGHS recommended.
Some of these efforts would rely on tried and traditional methods for educating, including making sure genetics is included in exams for physician and public health provider education and training, McGrath said.
But the training the committee considered also may include using "continuing education approaches to make sure people stay abreast of the field, and to make sure that the knowledge that they're practicing with isn't two, three, four, or five years old," she said.
The report also recommended that HHS should evaluate the public health workforce to identify future education and training needs for those working in genetics-related areas, and to fund the development and implementation of programs that address those needs, according to the report.
"Our intention was to think more broadly into the future about who are all the people [providing genetics-related services], and who can help design a way of assuring education and training with an ever-moving target," McGrath said.
"The 'new normal' isn't just to make sure textbooks are up-to-date," but also to integrate genetics education into credentialing exams, accreditation of institutions, continuing education, and into a "long spectrum of learning," she added.
McGrath explained that the aim of the task force on public health that HHS would form would be to "pull together all the people who are involved in all of these to see if we can integrate education in an innovative way, so that it's not just in the classroom, not just in the clinic, but it moves down the whole pathway."
SACGHS also advised that HHS should support programs that increase the genetic competencies of health care workers in underserved communities and ensure that consumer and educational materials are tailored to the needs of these communities.
The committee recommended that HHS identify communication strategies for translating genetic knowledge into information that patients and consumers can use to make health decisions.
If the communities of physicians and public health workers are a diverse bunch, the range of potential genetics consumers is far wider, and includes individuals from all levels of education and knowledge about genetics.
"Our position is that we should respect consumers. They can access information and deal with it appropriately. We're trying to avoid the idea that it's dangerous for them to access this information. They're certainly going to. And they're able to handle the information," McGrath told GWDN.
Being able to "handle" information does not mean the same thing as being confident in trusting its sources, however. McGrath said that many interviews the task force conducted suggested that people are likely to want to turn to the government as a "trusted source to help them vet" information available about genetics.
"People understand that there is a lot of potential misinformation and exaggerated claims out there that are accessible to consumers, and they would like to turn to a source to help them decide what is and what isn't true."
Another SACGHS proposal is for HHS to start an internet portal to provide comprehensive, accessible, and trustworthy web-based genetic information and resources for consumers.
Lastly, the report recommended HHS take steps to improve and promote the widespread use of family history tools.
The committee suggested that the responsibility for implementing and monitoring these recommendations should fall on the Agency for Healthcare Research and Quality, the Centers for Disease Control and Prevention, and the National Institutes of Health.