This week in NEJM

This week Kathy Hudson Ph.D. opines on the difficulty of prohibiting genetic discrimination, detailing the hurdles that this legislation has had. If you have been asleep at the wheel, HR 493 passed the house 420-3.

This article also points out the huge loopholes in the Health Insurance Portability and Accountability Act, including its lack of addressing genetic information for underwriting purposes. Currently 35 states have some limited form of discrimination in employment, 47 with health insurance, leading to an inconsistent approach to prevention of discrimination. The states' legislation are swiss cheese like and difficult to apply. For example, some laws exclude genetic tests from "routine lab tests". Given that many genetic tests are "routine" these laws are now outdated and do not apply.

I would like to take a closer look at this proposed legislation now.

First what the legislation does:

1. Prohibits group and individual insurers for using genetic info in setting premium or contribution amounts



2. Prohibits insurers from requesting/requiring a patient undergo a genetic test



3. Prohibits employers from using genetic information to make employment decisions



4. Prohibits employers from requesting genetic information about an employee or their family

What it does not do:

1. Does Not prohibit medical underwriting based on CURRENT health status



2. Does Not mandate coverage for any genetic tests or treatments



3. Does Not interfere with a physicians ability to request a patient or their family members undergo genetic testing



4. Does Not create special remedies for employers other than those outlined in the Americans with Disabilities Act



5. Does Not prohibit workplace collection of genetic information for genetic monitoring programs such as wellness programs, state and federal medical leave programs, and in cases of inadvertant acquisition of this information, But Does prevent the employer from disclosing or using this information.

The Gene Sherpa says: The bill has passed one Senate subcommittee and now sits poised to become law by the fall. I for one am very excited about the possibilities this legislation brings.