The field of medical genetics is exploding with new information and available genetic tests. To fully benefit from these advances, it is essential to have experts that can help navigate this information. Genetic counselors are these health navigators; professionals who play a critical role in helping patients and families understand these new developments.
Unfortunately, many patients do not have access to genetic counselors because there are not services in their local area or because genetic counseling is not covered by their insurance plans. As a result, many clinics rely on genetic counselors who are paid by genetic testing companies which creates an inherent conflict-of-interest; in these cases, the genetic counselors giving the advice also may have an interest to increase the uptake of genetic tests, which may not always be in the best interest of patient care. In addition, there is a great need for independent, up-to-date and unbiased genetic information that people can easily access.
Genetic Support Foundation was established to increase access to objective information about genetics and to provide independent genetic counseling services.
Genetic Support Foundation is developing web-based and patient-oriented materials about medical genetics that include up-to-date information on topics that are most needed including cancer and prenatal genetics. We are also producing innovative and lively videos to help patients and families decide what genetic tests to undergo in these areas. Future plans include the development of materials for other areas of medical genetics such as pharmacogenetics, cardiovascular disease and Alzheimer’s disease.
Genetic Support Foundation is also involved in grassroots community outreach and education through the provision of presentations and workshops on genetics to health professionals and patient groups.
Financial Support for Patients
Many patients and families are uninsured or underinsured and may not be able to afford genetic counseling or tests that are important for their care. In some cases, families go through a “diagnostic odyssey” in which they go from one clinic and doctor to another searching for the underlying cause of their disorder. Genetic Support Foundation has started a fund to help defray some of these costs for such patients.
Genetic Support Foundation is developing innovative models to provide genetic counseling services in clinics and hospitals. To better reach patients in rural communities, we are pioneering systems to provide services via telehealth. By improving the efficiency and efficacy of genetic counseling, we will enable more patients to receive genetic counseling and when indicated, the genetic testing they need. GSF is committed to maintaining independence of lab testing companies with the goal of providing objective genetic counseling that is centered around the needs of the patient, rather than the profits of the testing labs.