No one can doubt that the Internet is now an integral part of business, education, and health care.

In fact, few technological advances have had as much an impact on communication and information dissemination as the Internet. Once used primarily by academic, government, and private research organizations, now physicians, patients, educators, and students use the web to seek the most up-to-date information on rare genetic conditions and other health concerns. Health care providers increasingly see individuals who have searched for symptoms, diagnoses, management, treatment, and research prior to clinic visits through the Internet searches.

With the publication of the Human Genome Project in February 2001, over 30,000 genes have been mapped and sequenced. These genes are associated not only with rare genetic disorders, but also with susceptibility to common diseases. The newly announced Haplotype Mapping Project promise more rapid discovery of diagnostic and therapeutic methods to manage genetic diseases.

The plethora of new genetic information will have tremendous impact on health care, disease prevention, and health promotion. Because of the rapid pace of research and discovery, the most up-to-date information necessary to practice genomic medicine is frequently found on the Internet. For instance, to help keep up with information about diagnoses, practice guidelines, treatment, management, DNA testing, and research, you could go to the Genetics Education Center web site at the University of Kansas Medical Center www.kumc.edu/gec/geneinfo.html. Links are also provided to genome centers and sites that focus on ethical and legal issues associated with genetic medicine.

The Genetic and Rare Conditions Information site, www.kumc.edu/gec/support/groups.html, includes information on over 350 genetic and rare conditions, including basic genetics, clinical features, management, treatment, medical advances, patient brochures, and community resources, frequently in multiple languages. Both the American Society of Human Genetics (ASHG) and the American College of Medical Genetics (ACMG) have developed genetic policy recommendations on the use of the new genomic information, www.kumc.edu/gec/prof/soclist.html.

The National Human Genome Research Institute (NHGRI), NIH (www.nhgri.nih.gov/) and the Department of Energy Human Genome Program (www.er.doe.gov/production/ober/hug_top.html) sites have extensive research updates, news, frequently asked questions sections, and educational materials. The Genetics Education Center site contains teacher lesson plans and activities, museum exhibits, other student resources. www.kumc.edu/gec.

Unfortunately, the quality of information on the Internet varies widely—ranging from highly technical professional articles to anecdotal information on personal home pages. Information may or may not adhere to established guidelines, peer-review, indexing, and cataloging standards of published medical literature. But the quality of information continues to improve as governmental agencies, educational institutions, research centers, and clinics add informative materials. Of course, evaluating the quality and accuracy of Internet information is problematic. However, numerous organizations have published criteria for assessing the quality, reliability, and validity of health information on the Internet. For example, the Health on the Net Code of Conduct (HONcode), is displayed on sites that indicate author, respect information privacy, display date modified, reference scientific sources for health treatments and benefits, provide address of site manager, and identify sponsorship and funding. www.hon.ch/. Ideally, web sites should also utilize people-first language, and be easily used by those who have difficulty with color vision, use voice recognition software, or use other adaptive devices.

The Internet is far reaching, and both medica professionals and lay people are more and more using its vast capabilities. The result is technical knowledge being transmitted more rapidly and more accurately to millions of people.

Debra Collins, is a certified Genetic Counselor and Associate Clinical Professor at the University of Kansas Medical Center. She serves on the Board of directors of Project Explore, a new Kansas City organization that brings education and business together. She can be reached at 913.385.0585 or by e-mail at dcollins@kumc.edu.