Genetics Education for the Public

The rapid pace of advances in knowledge about the genetic basis of human health and disease has generated much interest on the part of the public to reach a better understanding of this exciting area of medical science. We are involved in a number of efforts to reach out to the public and to ensure that accurate and accessible information is available to anyone who seeks it. Some of the topics that we have focused our efforts upon include:

• Family Health History - The family health history is underutilized in its capacity to act as a tool for understanding genetic disease and the risk for inherited disease within a family. Our work in this area includes a project for employees within our hospital as well as other efforts to encourage health literacy in this important area for our patients and our community. Learn more.
• Genetic Testing - As more genetic tests become available to the public, many patients and healthcare providers are unsure regarding who should be tested. Our team participated in organizing a public seminar sponsored by Harvard Medical School entitled: "To Test or Not To Test: Want to Know What's in Your Genes?" This seminar was attended by over 200 people and the presentation is available on the web at http://www.hms.harvard.edu/longwood_seminars/
• Treatable Genetic Diseases - We are involved in the arena of public education, with a focus on a group of inherited diseases known as the Lysosomal Storage Diseases. Our public education efforts are part of our commitment to provide care for patients with this class of disease within the Longwood LSD Center. Within the last several years, new therapies involving enzyme replacement in the lysosomal storage disease states have become available. http://www.longwoodlysosomalstorage.org/index.html