More About Use of Specimens and Genetic Information

Specimen Retention

DNA specimens are not returned to individuals or to the referring health care providers unless specific prior arrangements have been made. After testing is complete, the de-identified submitted specimen may be used for test development and improvement, internal validation, quality assurance, and training purposes. Specimens from residents of New York State will not be retained for more than 60 days after test completion, and will not be included in the de-identified research studies (described below) unless specifically authorized.

Database Participation

De-identified health history and genetic information can help healthcare providers and researchers understand how genes affect health. Though people undergoing testing may not personally or directly benefit, sharing this information may help healthcare providers offer better care for their patients. Sharing this information may also help researchers make discoveries that may help other people. GeneDx shares this type of information with healthcare providers, researchers, and healthcare databases. No personal identifying information will be shared, as it will be replaced with a unique code.

Even though a code is used for the reporting to the databases, there is a risk that a person could be identified based on the genetic and health information that is shared. GeneDx believes that this is unlikely although the risk is greater if a person’s genetic or health information has been or will be shared with public or private resources such as genealogy websites.

Recontact for Research Participation

Separate from the above, GeneDx may collaborate with researchers to advance knowledge of genetic diseases and to develop new treatments. If there are opportunities to participate in research relevant to a person’s test results or health condition, GeneDx may allow a person’s healthcare provider to be recontacted for research purposes. Examples may include the development of certain types of new testing, drug development, or new treatments. In some situations, such as if a person’s healthcare provider is not available, the person may be contacted directly.

Any research that results in medical advances, including new products, tests, or discoveries, may have potential commercial value and may be developed and owned by GeneDx or the collaborating researchers. If any individuals or corporations benefit financially from these studies, no compensation will provided to those undergoing testing or their heirs.

People who undergo testing at GeneDx may choose not to be recontacted for research participation, and may do so at any time. Please use Opt-out for being re-contacted for research participation to let us know.