August 22, 2000

Subject: Genetic Privacy Law Signed

With genetic testing becoming a more routine part of diagnostic medical examinations, Acting Gov. Jane Swift signed a bill that attempts to balance the privacy rights of patients with the informational needs of insurers and researchers.

The bill prohibits discrimination in health insurance, banking and employment on the basis of genetic information and bans health insurers from refusing to provide insurance or charging varying rates based on genetic data. The bill does allow life insurers to charge higher premiums or deny coverage to applicants who refuse to say if they've taken a genetic test or to disclose results of earlier tests, a measure that legislative supporters say reflects the power of the life insurance lobby on Beacon Hill.

Supporters of the bill say its privacy protections may prompt more individuals to embrace genetic testing to learn about their own health and health risks and take precautions or make lifestyle changes based on that information. "There are genetic markers for about 200 diseases," said Sheila Decter, New England director of the American Jewish Congress and part of an active "gene team" that backed the bill.

Swift signed the bill Tuesday as Gov. Paul Cellucci was on vacation. Massachusetts now joins 36 other states with genetic privacy laws. Swift said the Bay State's law is "at the forefront" among those states.

The bill almost didn't make it this year. In late July, the House and Senate rushed it through the branches in the last few days of formal legislation sessions. And last week, lawmakers corrected a mistake in the bill that might have botched a nascent state database designed to store the DNA samples of serious criminal offenders. Swift said the work on genetic privacy and discrimination laws is not done.

"What we have all said is that this is a good first step," Swift said. "Particularly as it affects insurance matters, there are a lot of questions that still have to be answered and perhaps some privacy protections that have to be met." An omnibus privacy bill filed by Cellucci and Swift last year fared poorly. Swift says laws are needed to protect medical, consumer and financial records from modern-day "data miners."

Rep. Jay Kaufman (D-Lexington) has sponsored a medical records privacy bill since 1996. After the press conference, Kaufman said genetic information is now better protected than average medical records. But Kaufman said consensus on the medical records bill isn't far off. He'll meet with House lawyers after Labor Day. And while he admits the bill is on "life support," Kaufman hasn't given up hope for its chances this year. The Legislature is meeting in informal sessions for the rest of 2000.

"It has been a little bit frustrating that there hasn't been a little bit more demand for this," he said. "We don't realize how compromised our privacy really is. We still have a long way to go. Most of our laws predate computers, predate HMO's, predate genetic research, and predate a national medical database."

The bill grants access to aggregated and de-identified genetic information to researchers working on cures to longstanding diseases and cancers. Swift said "a careful balance was struck" between the privacy needs of patients and informational needs of researchers.

Backers of the bill say its protections may spur more individuals to have genetic tests done, but they warned test takers should be prepared to deal with receiving test results. Jane Matlaw, chairwoman of the Jewish Women's Coalition on Breast Cancer, said genetic testing is "not for everyone" and warned of its "psychological implications." But Matlaw, noting the benefits of testing, said the fear of losing insurance or having one's rates boosted based on genetic test results is no longer valid thanks to the new law.

Enid Shapiro, a self-described "two-time survivor of breast cancer," agreed that fears of losing coverage or higher rates have been a "barrier" to genetic testing. For cancer victims and their families, the new law means there's "one less thing to worry about," said Shapiro, adding, "We want to see genetic testing used as a life-saving measure but not as a tool to be used against patients and their family members."

Rep. Harriette Chandler (D-Worcester), co-chairwoman of the Legislature's Health Care Committee, praised "ceaseless and unrelenting" advocacy of gene team members, which include the AIDS Action Committee, American Cancer Society, the Disability Law Center, and the Massachusetts Medical Society.

In May, scientists announced to the world that they've mapped the 3.1 billion subunit of DNA that make up the human genetic code. The map may allow doctors to correct defects before birth, and tailor medications to prevent diseases. The breakthrough put pressure on lawmakers to enact the privacy bill.

Among other things, the new law:

• Bans the disclosure of genetic testing results without informed consent;
• Requires prior written consent for any reports or records regarding genetic information;
• Adds genetic information to the list of characteristics protected under anti-discrimination laws;
• Makes it illegal for insurers to force policyholders to take genetic tests or disclose test results; and
• Creates a 13-member commission to oversee the law's implementation.

While the privacy protections and safeguards are greater in the health insurance, banking and employment sections of the new law, the restrictions on the use of genetic tests in life and disability insurance make Massachusetts one of only a few states to have passed laws in that area. According to the governor's office, only Georgia and Montana prohibit discrimination in both lines of insurance and only 18 states restrict the use of genetic information in one of the two insurance lines.