Lawmakers are considering a proposal that would allow Utah employers to access workers' genetic information if a "compelling need" outweighed the person's right to privacy.
The proposal, which is being readied for consideration by the 1999 Legislature, would also allow insurance companies to determine if a person is using a genetic test to "game" the system, such as buying life insurance after learning of the probability of disease through a DNA test.After the Genetic Testing Privacy Act failed in the 1998 session, sponsor Rep. Nora Stephens, R-Sunset, and the Health and Human Services interim committee have continued to study the complex nature of genetic testing and what protections Utahns may need to ensure privacy.
U.S. Sen. Bob Bennett, R-Utah, is drafting similar federal legislation.
John T. Nielsen, vice-president of Intermountain Health Care, suggested the committee wait for the federal legislation, which may supersede anything Utah does. He also cautioned the committee from suggesting insurance companies don't have a right to ascertain risk. He said it would be "manifestly unfair" for companies to be denied information.
Committee members did not take action on the proposal but agreed to continue discussing it at future interim meetings.
The intent of Stephens' legislation is to ensure that Utahns who undergo the tests for medical reasons or research are not discriminated against.
Rep. Mary Carlson, D-Salt Lake, expressed concern that the bill didn't go far enough to protect privacy. Once a person has taken a DNA test, they are vulnerable to insurance companies or employers asking for the results.
"Ignorance is safer than this bill," Carlson said.
Stephens said there is a great need to continue to work on the issue. She cited a 1997 federal task force that concluded the benefits of genetic testing may never be realized if people are afraid to take the tests.
The proposal being considered indicates researchers may only use Utahns DNA if a gatekeeper is established ensuring the individuals are not identifiable and the study is "blind."
A key component of the draft is "informed consent," meaning a health official would have to verbally explain how the results of genetic analysis could be used, that genetic counseling is available and other intricacies of the proposed law. A witness would have to verify the verbal exchange took place.
Val Bateman, spokesman for the Utah Medical Association, urged lawmakers to consider the "paperwork and management nightmare" the proposal may create.
But Joyce Dolcourt, a mother with a disabled son, thanked the committee for addressing consumer protection. She said she fears that she, her husband or her healthy son could be discriminated against by their health insurance if it found they carried a gene for a disease they don't manifest.
Cori Sutherland said the Utah American Civil Liberties Union also supports the legislation.