April 06, 2020

3 bills address medical privacy > Genetic discrimination feared

AUGUSTA — Depending on who gets hold of it, and what their motives are, your medical record can be a clue in solving problems, a tool for helping others, a health care cost predictor, and a basis for denying insurance coverage.

But surprisingly, the rules for who can get and use powerful medical and genetic data are inconsistent and scattered, a hodgepodge of professional codes of ethics, accreditation standards, and state and federal guidelines tacked together over time.

“It’s a mess,” said Gordon Smith, Maine Medical Association vice president.

Maine legislators and lobbyists are working together to improve the situation and enact consumer protections. Congress is also studying many of the same issues, with committees drafting right-to-privacy models.

Three controversial bills, which were carried over from last session, are heading through the Legislature this winter: LD 1737 and LD 1779 by way of the Health and Human Services Committee and LD 1243 by way of the Committee on Banking and Insurance.

Genetic information should be confidential so insurance companies and employers can’t discriminate against high-risk gene carriers, say supporters of one of the bills introduced last session by Rep. Jane Saxl, D-Bangor.

And if discrimination isn’t bad enough, worse consequences could result, others have testified. Because of fears of injustice, genetic researchers already are having trouble recruiting test subjects. That could delay the development of better treatments — and cures.

“This is big stuff, like cloning,” said Laurel Bezanson, volunteer advocate for the Maine Breast Cancer Coalition. “If science is allowed to go to the stars like it should, we’re going to see some dramatic changes. This is what’s going to make a difference for people with chronic, potentially fatal illnesses.”

The issues are complicated and technical, affecting doctors and patients, public health and research, and insurance companies that offer policies for health, life, disability and long-term care coverage.

Under the draft that has evolved in several hearings and work sessions, the genetic proposal would primarily affect health insurers, though “unfair discrimination” would be outlawed in all insurance arenas, said Saxl. The bill also bans genetic discrimination by employers.

Saxl, who is optimistic that some form of her bill will pass this year, said health insurance has been the first protected because it is seen as a right instead of a privilege.

The Breast Cancer Coalition and the Maine Civil Liberties Union have pushed for broader legislation affecting other kinds of insurance, but the MCLU’s Sally Sutton described an uphill battle.

“The HMOs, doctors, insurers, all have their lobbies there, and there really aren’t the same number of voices for consumers,” she said. “What’s happening is that those industries are driving policy.”

Wanting to reach consensus, to better their chances of passing a bill, a group of interested parties called together by the Committee on Health and Human Services has met eight times since August to discuss two other bills with similar goals devised by the Maine Medical Association and the Maine Civil Liberties Union.

Introduced last session, both bills sought to limit access to medical records. Discussions — each lasting four or five hours — involved more than 40 participants with diverse backgrounds including government, health care and insurance.

“There was concern that if we didn’t get together, the insurance companies would win out,” said Smith, of the medical association. “Particularly in behavioral health, there’s a huge problem with the information they seek. The questions they ask are inappropriate.”

Questions considered by the study group were varied.

If a doctor wants to consult with a colleague about a case, should the patient’s signature be required to authorize such a conversation?

What about researchers calculating disease rates? Should they have to get permission from everyone whose diagnosis is part of the equation?

By all accounts, the process was productive. A report to be presented Tuesday to Health and Human Services Committee members will outline points of agreement, which may be consolidated in a single bill.

“I think it’s pretty straightforward stuff,” Smith said. “It’s pretty unusual for the civil liberties union, the medical association, the hospitals and the others to agree on something.”

According to group leader Julie L’Heureux, members agreed that the law should confirm the private nature of health information, empower patients to change their medical records and entitle them to copies. The group identified occasions when information could be released without authorization, such as for law enforcement, public health and organ donation purposes.

Andrew MacLean, staff counsel for Blue Cross and Blue Shield of Maine, said it will be important to strike a balance in creating protections that still allow health care and insurance providers to function.

“There are parts of any one of the bills that could be largely administratively unworkable, that would so slow up the process of obtaining medical care and getting it paid for, I don’t think anyone would be happy,” he said.

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