NHGRI Long-Range Planning - Comments

National Human Genome Research Institute

National Institutes of Health
U.S. Department of Health and Human Services


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Comments on "Revised White Paper #3: A Vision for the Future of Genomics: Education and Community Engagement"

I truly believe that if you want genomics to be useful to the public, and even providers, that you must, must, must engage the public health community in this process. And not just a research/academia aspect either. It must be done at the practitioner level at state and local health departments. These professionals are NOT ready for genomics and turn away from "geneticy" language and studies. Family health history, DTC marketing, and provider use of genetic information makes more sense to practitioners who can then bring together stakeholders amongst all levels of our society to answer your proposed questions. Funding should be given to state and local health departments and community based organizations to figure out what messages resonate with people and not in a research setting. This funding should focus on public health application of family health history and school based educational programs such as being done by the University of Utah Genetic Science Learning Center.I think this is the one of the most critical issues facing genomics - health education, community engagement, and use of family health history. The other genetics stuff like sequencing is cool but really, not something that public health practitioners and providers understand or quite frankly care about. They need stuff that is applicable to their everyday jobs and help to figure out how to intregrate genomics slowly into their interventions, policies, and ways of thinking. I also think you must begin to address genomic literacy and knowledge within health education programs at universities and schools of public health to prepare a new generation of public health professionals to deal with genomics applications and apply research to the real world.

(254) Thursday, April 30, 2009 12:21 PM


1. Health Professional Genomic Education: it would be beneficial to include a genomic education section in specialists' annual meetings. It is very difficult to arrange seminars for physicians due to their regular work schedule; they would be more open if part of their annual meetings.
2. Public Education:genetics should be incorporated at all educational levels (HS, technical schools, etc) but the stringent demands of meeting Standards limits how much time can be devoted to the subject. Unless genetic understanding/literacy occurs at the public level, it will not be a relevant factor in medical practice(s). There are several good outreach educational projects on paper, but grant monies are extremely difficult to secure. Perhaps there are ways to better, more equitably distribute these funds?
3. Community Engagement: This section of the 'Paper' asks many relevant questions and opens opportunities to multiple research projects. Funding is needed to promote these research opportunities.
For States which have developed Genetic Plans, it would seem that the partnerships are there, the needs have been identified, and there should be some tangible results available to address these questions that others could adopt.

(255) Monday, May 4, 2009 1:41 PM


The efforts of NCHPEG to date have been helpful and the organization provides links to a number of important resources for health care providers.
However, more resources are necessary here as well. There could be a direct link on the home page to fact sheets for health care providers, designed for each discipline. There could also be fact sheets for a clinician to print and give to a client.
There could be glossy posters available for purchase for display in clinics that provide basic information for consumers regarding the role of genomics in overall health and where to go for more information.
Could NCHPEG or NHGRI take a more active role in participation in conferences held by various health provider professional organizations?

(305) Tuesday, June 30, 2009 12:31 PM


Health Professionals: I agree with 254 that health professionals, in general, will not be interested in or have need for understanding the technologies behind genomic research and medicine. The physicians I know, particularly the GPs and family practitioners, express interest in a checklist-type of tool that can be applied at point-of-service. This will be a challenge but isn't fundamentally different from the checklists of standard practice that physicians like to use (or wish they had) for lots of complex disorders now. Also, simple tools to facilitate the (long) transition to genomic medicine will be the only practical alternative to better K-16 and professional training in genetics, which is likely to take a generation. Public Genomic Education This is a political/economic point, but I think a non-trivial one: Third-party payers largely insulate the public from the consequences of their health-care choices, including selection of services, frequency of service, and understanding of services sought and delivered. Information is prized when it has value, but our current, broken health care system has so warped the market for information that consumers see no value in understanding evidence-based practices, health outcomes of various providers and systems, etc. I may not understand why the Rx my doc prescribed didn't work, but I don't care too much (and not at all before the fact) because it didn't cost me much (i.e., not the real cost, if I'm insured). I can always go back to her office and she'll prescribe another. If I have to pay out of pocket, I want to know in advance who is using genetic screening of P450 polymorphisms to make the best drug choice possible because it can save me money. I don't know how we create the conditions for "wanting to know" in the public in the absence of such economic drivers, but we shouldn't pretend that this isn't a barrier. Re rare diseases: Why is the premise that we should use rare diseases as learning tools for common diseases (quest. 9)? I would argue that our current and historical focus on rare diseases is one factor contributing to significant and pervasive misconceptions in human genetics that stand in the way of understanding the genetics of common disorders. I think our starting point can be common diseases, but this is a hypothesis that must still be tested. Regardless, I think a better question might be "What prior knowledge is needed for the public/students to understand how genes influence common disease? The K-12 genetics curriculum (as well as undergrad and beyond) is badly out of date and in need of revision. One of the major problems is that state and national standards are not well structured to support modern genomics or a future where genomics play a role in health care. Geneticists should be involved in helping to revise state standards, based on a consensus list of core concepts. It is those standards that drive most of the content in our K-12 schools. Textbook authors and publishers will be crucial in effecting change, especially at the undergrad and grad levels. Quite possibly the professional schools, which already have too little genetics, will be the last to change. Professional societies will be the levers of influence for that audience.

(306) Tuesday, June 30, 2009 2:12 PM




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