Skip to main content

UPDATE: Massachusetts Bill Looks Beyond GINA

This article has been updated with additional comments.

By a GenomeWeb staff reporter

NEW YORK (GenomeWeb News) – Massachusetts' state legislature will consider a new bill that would enhance protections on and privacy of individual genetic information beyond that provided by the national Genetic Information Nondiscrimination Act of 2008 and protections already established in part by the state's courts.

The new Massachusetts Genetic Bill of Rights seeks to make genetic information and materials equivalent to personal property, makes it harder for health care institutions, insurance companies, and others to deny services based on genetic information, and creates other specific protections.

The bill represents a "significant effort to expand individual privacy protections and basic human rights to all people with a genetic condition or marker," Steve May, executive director of the Forum on Genetic Equity, said in a statement today.

"In the days and weeks to come, we expect a vigorous and dynamic conversation to ensue, and we welcome the opportunity to engage in this conversation on behalf of all Bay State residents with a genetic condition or marker and their families," May added.

Among the proposals in the bill, which was introduced by State Senator Harriett Chandler (D-Worcester):

• Individuals have an expressed right to privacy with respect to genetic information and material;
• Genetic information and material are as personal property;
• Health care facilities cannot deny services solely based on the discovery of a genetic marker;
• Genetic information and material may not be used in conveyance of life, long-term care, and disability insurance;
• Auto insurers cannot use genetic information in establishing policies and rates;
• Genetic information cannot be used in determining credit worthiness;
• The state's MassHealth system cannot deny coverage and benefits solely on the basis of a genetic marker or condition;

May told GenomeWeb Daily News Friday that the bill is an effort to provide privacy protections beyond GINA, which he said was a "fairly limited … first step" in that it focused on employment and health insurance issues.

May said that while GINA was a landmark law, new technologies and electronic health records could imperil people in unexpected ways, and that this proposal is "a continuation of the work that began with GINA."

"Five or six years ago, I don't know that we thought that your bank would get hold of your genetic profile. Now it certainly is conceivable that your banker will say 'Hey, you're a bad risk … You, with your cardiac history, might not be able to pay a note over thirty years.' A confluence of events has created the necessity to take a long hard look at guaranteeing that individuals are secure," May explained.

He said such a law is needed because in several new areas genetic information can be used to discriminate against people who carry certain markers and who effectively become new classes of people based on their risks for conditions – risks which potentially could affect their ability to get life insurance or a home loan.

"We're not interested in putting up road blocks" to slow down the life sciences industry or biomedical researchers, May said. "We are interested in having some road signs."

It is not immediately clear when the legislature will begin considering the bill.

The Scan

Call to Look Again

More than a dozen researchers penned a letter in Science saying a previous investigation into the origin of SARS-CoV-2 did not give theories equal consideration.

Not Always Trusted

In a new poll, slightly more than half of US adults have a great deal or quite a lot of trust in the Centers for Disease Control and Prevention, the Hill reports.

Identified Decades Later

A genetic genealogy approach has identified "Christy Crystal Creek," the New York Times reports.

Science Papers Report on Splicing Enhancer, Point of Care Test for Sexual Transmitted Disease

In Science this week: a novel RNA structural element that acts as a splicing enhancer, and more.