Genetic tests are incredibly valuable tools.

Genetic tests are incredibly valuable tools. If you were in charge of the Department of Health and Human Services, how might you guarantee that genetic tests will be used to benefit people, not to harm them? Even though there have not yet been any genetic discrimination cases tried in U.S. courts, can anybody say why it's important to establish a set of ethical standards now? What changes could be made to GINA in order to make it better?

Genetic data should exist in two formats only; a research format that doesn't contain any identifying information and a personal format that does. The personal data would only be available to medical care providers for the purpose of treating the owner of that one profile. Researchers and insurance companies could use the bulk data to statistically measure conditions within our society but it couldn't be used for setting individual rates or allocating care. The end result would be that medical care providers could compare an individual's risks without them being penalized for something in their genetic makeup.