ANNAPOLIS – Insurers and medical researchers are continuing to express reservations about proposed legislation to ban unauthorized use of a person’s genetic information in Maryland.
Two bills last General Assembly session would have restricted the use of test results that, by analyzing DNA, can predict the likelihood of getting certain diseases. The measures outlawed discrimination based on test results and made those results the property of the person tested.
The legislation was held for further study, but is likely to be re-introduced in the 1998 session.
“I would hate to see [genetic information disputes] decided by centuries-old property-law precedents,” Bill Pitcher, lobbyist for the Pharmaceutical Research and Manufacturers Association of America, told the House Environmental Matters Committee this week.
Pitcher said the legislation posed other problems, including:
* special informed-consent requirements for genetic tests
* a more complicated process of notifying the person tested
* and requirements for the destruction of blood and tissue samples and other forms of genetic information.
“Creating property rights regarding genetic testing could jeopardize clinical trials that are critical to biomedical innovations,” Pitcher’s group wrote last summer in a letter to the committee.
League of Life and Health Insurers lobbyist Debbie Rifkin said at the hearing, held Tuesday, that only a small number of people stood to benefit from the legislation.
Ninety-six percent of applicants for life insurance are accepted, and 91 percent do not need to pay a higher premium because of pre-existing conditions or other factors, she said.
Insurers for years have relied upon medical testing, Rifkin added, describing genetic testing as a “newfangled” version of older methods.
The Department of Health and Mental Hygiene also opposed both bills, on the grounds that they would impose an “overwhelming burden of paperwork” on anyone working with genetic information.
Del. Michael J. Finifter, D-Baltimore County, who sponsored one of the bills, had asked that it be withdrawn for study.
Finifter said this week that he would introduce amended legislation next session, and that he hopes to expand the definition of genetic test results to include all evidence of genetic disorders, including family history.
He said he also would support amendments narrowing the definition of genetic information to “results of a genetic test;” exempting medical histories, institutional medical research and organ donation; and removing the clause defining genetic information as personal property. Delegate Robert L. Frank, D-Baltimore County, another sponsor, said that he still likes the idea behind the legislation, but will “wait and see what the bill looks like” before deciding whether to support it. -30-