Mass. financial‑services committee hears testimony supporting bill to bar genetic discrimination by life, disability and long‑term‑care insurers

The Joint Committee on Financial Services took public testimony and heard arguments in favor of H5112, a bill that would prohibit life, long‑term care and disability insurers from using genetic test results in underwriting. Chairs Sen. Paul Feeney and Rep. Jamie Murphy convened the virtual hearing, which proceeded despite a severe storm that closed the State House.

Representatives of patient and disease‑advocacy organizations told the committee that the absence of state protections leaves people weighing health decisions against financial risk. "No one should have to fear financial discrimination for seeking that knowledge," said Robin Biggs, a constituent of Rep. Dave Rogers who testified that she carries a BRCA2 mutation and chose preventive surgeries and ongoing screenings after genetic testing. Biggs recounted that she was advised to secure life insurance before testing because results could be used by insurers.

Lindsay Jack, managing director of advocacy at the ALS Association, said genetic testing is increasingly important for identifying risk, qualifying patients for clinical trials and advancing personalized therapies. "No one should have to choose between protecting their health and protecting their financial future," Jack said, explaining that the bill would prevent genetic test results from being part of the underwriting process while leaving insurers able to underwrite based on actual medical diagnoses.

Lisa Schlager, vice president of public policy at FORCE (Facing Our Risk of Cancer Empowered), described the broader hereditary‑cancer community's concerns and cited screening guidelines for syndromes such as Lynch Syndrome. "An estimated 10 percent of all Americans carry an inherited mutation that increases cancer risk," Schlager said, adding that fear of discrimination discourages some people from testing and from participating in research.

Rep. Dave Rogers, sponsor of H5112, and witnesses told the committee the federal Genetic Information Nondiscrimination Act (GINA) restricts use of genetic information for health‑insurance and employment decisions but does not cover life, long‑term care or disability insurance. Rogers described that gap as the reason many people delay or forgo genetic testing despite potential health benefits.

Committee members asked witnesses practical questions about underwriting and applications. Rep. Steven Howitt asked whether insurers commonly request genetic‑testing information on applications; witnesses said genetic information can appear in medical records used by underwriters and that the bill would prohibit requiring genetic testing or using test results in underwriting decisions.

No committee vote was taken on H5112 during this hearing. Committee leadership said the record remains open to written testimony; Feeney noted two other bills on the morning docket (H4914, related to the Massachusetts Uniform Commercial Code, and S2921, related to travel insurance). The chairs thanked Legislative Information Services and clerks for enabling a rapid switch to a virtual format. The committee moved, seconded and approved a motion to adjourn.

The committee did not adopt or reject H5112 at this session; further committee action or scheduling for a markup was not announced during the hearing.