Hermansky-Pudlak Syndrome Network Inc

The HPS Network joined dozens of other genetic disease organizations in writing a letter to Secretary of the Treasury Timothy Geithner, Secretary of Health and Human Services Kathleen Sebelius and Secretary of Labor Hilda Solis to urge their agencies to abandon calls to delay the implementation of the Genetic Information Nondiscrimination Act (GINA). The letter also expresses objections to regulatory proposals that would allow companies to collect genetic information as part of company wellness programs. Such a loophole would thwart the intent of GINA.

GINA was signed into law in May, 2008 by President George W. Bush. It passed both houses of Congress with bipartisan support. Since the passage of GINA, federal agencies have worked on regulations to help implement the law when it takes effect in December.

GINA is designed to protect Americans from discrimination based on their genetic likelihood to develop various health conditions. It prohibits discrimination on the part of health insurance companies and employers. The law helps to further ensure that genetic information is protected.

Corporate wellness programs should be able to promote good health among employees without access to employee genetic information.

The U.S. Equal Employment Opportunity Commission issued a press release Nov. 20 indicating they were ready to assume responsibility for enforcing Title II of GINA. However, the final regulations implementing Title II are still currently under review by the Office of Management and Budget. That office says it will release the regulations as soon as its review process is complete.

That won’t be too soon for those affected by genetic conditions who have pushed for the legislation for 14 years. The HPS Network joins with other organizations to urge a speedy and complete implementation of the law.