Media Kit

The 13th meeting of the Secretary's Advisory Committee on Genetic Testing May 14, 2002

It is my pleasure to speak on behalf of NSGC, which represents nearly 2,000 genetic counselors in an array of medical specialties and is the leading voice, authority, and advocate for the genetic counseling profession. At this time, the NSGC would like to raise three specific points regarding support of genetics training, better reimbursement for genetics services, and strategies for educating the public about genetic testing.

We appreciate the opportunity to comment on the Genetic Discrimination Model Act sponsored by Senator James Seward. The NSGC would like to raise the following points regarding the proposed legislation:

1. Advanced Genetics Training and Education needs to be a Priority - The NSGC encourages the SACGT to recommend increased funding for the training of genetics specialists. Yesterday's forum entitled "Genetic Testing and Public Policy: Preparing Health Professionals" was an important opportunity to discuss the integration of genetics education into healthcare. The increased use of genetic information in making healthcare decisions makes it crucial for all health professionals to have a basic understanding of genetics. Efforts to expand genetics curriculum in medical school programs and in the public domain are both important and laudable. NSGC pledges its commitment to increasing awareness of genetics among non-genetics specialists, especially primary care providers. As one example, the NSGC is working together with the American College of Medical Genetics to sponsor an interactive genetics module at the 2002 Annual Meeting of Endocrinologists.

   However, the incorporation of genetics into general healthcare requires an infrastructure of support, i.e. expert specialists in genetics. Genetics specialists are needed to assist in the review of complex personal and family histories and genetic test results, and to suggest appropriate medical follow-up. Ensuring quality genetics services - a key charge of this advisory committee - requires the presence of knowledgeable providers with in-depth training and expertise in genetics. Thus, recommendations about ensuring quality assurance need to include strategies for increasing the number of genetics specialists by increasing support of advanced genetics training and education. This includes supporting geneticist fellowship programs in genetics, genetic counselor master's level training programs, and nurse credentialing programs in genetics. Concerns have already been raised about the potential shortage of genetics professionals. Such a shortage could make it more difficult for individuals to have access to genetics services and could lead to the inappropriate use or interpretation of genetic tests. If the full benefits of genetic information are to be realized, funding is needed to support the training and education of genetics specialists.

2. Better Coverage and Reimbursement for Genetic Testing Services is Needed- The NSGC is committed to obtaining more appropriate coverage of genetic counseling and testing services. One of the basic ethical principles of medicine is to assure access to services regardless of one's ethnicity, geographic location, or ability to pay. The majority of individuals with health insurance are covered by group health plans. Coverage of genetic counseling and testing services varies greatly across different health insurance plans. Some plans have in-network genetics services or are willing to cover out of network referrals, while other insurance plans routinely deny such services even to families recognized to be at risk for genetic conditions.

   There also needs to be greater recognition that genetic testing services must encompass informational visits with a knowledgeable provider. In some cases, health insurers will pay for the cost of molecular testing yet will not cover the fees for genetic counseling and education. This issue seems to be somewhat unique to genetics providers; in other medical specialties, it is accepted practice to reimburse provider visits to discuss laboratory results and appropriate follow-up. Denying coverage of provider visits places an unfair burden on genetic testing programs as well as the individuals and families being seen. The NSGC strongly supports the adoption of billing codes specific to genetic counseling and education; the licensure of genetic counselors in all 50 states, and making it standard practice for health insurers to cover costs of genetic counseling and testing when medically indicated. To help resolve these issues, NSGC has assembled an Ad Hoc Task Force on Billing & Reimbursement, whose main objective is to identify strategies that result in better coverage of genetic counseling and testing services.

3. Educating the Public about Genetic Testing Requires Effective Strategies - NSGC commends the SACGT for its continuing commitment to educating the general public about genetics. This effort needs to consider a range of strategies from incorporating genetics units into public school curriculum to supporting the development of "user friendly" resources on genetics. These resources might include web-based interactive programs targeted on specific disorders or a series of public service announcements discussing the potential benefits of genetic technologies. Rather than spending your valuable time creating specific tools, we encourage this committee to focus on developing the vision and plan for increasing the public's awareness of genetic testing. Once that vision and plan are formulated, we, the Genetics Community, with expertise in translating complex medical issues and access to patient populations who can help guide us, would be happy to provide our expertise toward developing these resources.

In closing, we commend the SACGT on its accomplishments to date and appreciate the opportunity to comment on the committee's continuing activities. I would be happy to continue the discussion about any of these points if there are questions. Thank you for your time.