[JURIST] The US Department of Health and Human Services [official website] Monday hosted a discussion with genetic scientists, advocates and direct-to-consumer (DTC) genome mapping companies Navigenics, DeCode Genetics, and 23andMe [corporate websites] to discuss regulatory concerns. DTC genetic testing allows members of the public to obtain genetic data about themselves, usually to look for potential health risks, but does not require consultation with a health care professional. Public Health Genomics at the Centers for Disease Control and Prevention [official website] Director Muin Khoury said that the industry lacks effective regulation and worried that DTC genetic testing does not offer the insights into a person's health that customers may believe it does. Questions still surround the accuracy and usefulness of DTC testing, and some states want to impose legal limits on the industry. Last month, California warned DTC companies that they faced legal action [letter PDF; Genomeweb report] if they failed to comply with state laws requiring physician supervision of the process. New York has also issued similar warnings. Genomeweb has more.
In May, US President George W. Bush signed into law [remarks transcript] a bill aimed at preventing employers and health insurers from discriminating against people who have a genetic predisposition to disease. The Genetic Information Nondiscrimination Act of 2008 (GINA) [HR 493 materials] had passed with overwhelming majorities in both the House of Representatives and the Senate [JURIST reports]. Under the measure, employers are barred from basing hiring and firing decisions on genetic risk or predisposition to disease, while health insurers would not be permitted to deny coverage based on genetic information.