Whip Ackerman bill would aid RI cancer researchers, patients
STATE HOUSE – Deputy Majority Whip Mia A. Ackerman has introduced legislation allowing patients and medical researchers access to vital national data and research.
“Rhode Island patients deserve world class cancer treatments and our researchers need access to national data to provide it to them. This bill won’t just bring us up to speed with national medical research, it will allow us to be at the forefront,” said Representative Ackerman (D-Dist. 45, Cumberland, Lincoln). “I am proud to ensure that the scientists developing treatments for cancer patients in Rhode Island have access to every tool available in their fight.”
Modern medical research, particularly cancer research, relies on researchers sharing large data sets of anonymized patient information to compare treatment effectiveness across different population groups. Federal law allows this data sharing, provided the data cannot be traced back to any individual, but Rhode Island law prevents this sharing, which locks out Rhode Island researchers from participating in this national data-sharing.
“The strict requirements in Rhode Island are disadvantaging the people of Rhode Island by stifling research activities,” said Dr. Wafik El-Deiry, director of the Legorreta Cancer Center at Brown University. “We have been falling years behind other states in doing needed research to provide better care for the people of Rhode Island. This is hurting our scientists and our patients.”
The bill (2024-H 7301) would amend Rhode Island law to allow the sharing of anonymized medical research data in the same manner allowed under federal law and most other states. In nearly all cases, patient consent would still be required, but certain research that poses minimal risk would be allowed to proceed under a waiver of consent approved by the internal review board, consistent with federal law.
Rhode Island has unusually high rates for many types of cancer. Researchers like El-Deiry believe access to national data may help them understand why these high rates are occurring, in addition to helping them develop more effective treatments.
A longtime advocate for cancer patients, Representative Ackerman received the 2023 Public Service Award from the American Cancer Society’s Cancer Action Network and Brown University’s Legoretta Cancer Center for her work combating cancer. She has championed many pieces of legislation including a 2018 bill (2018-H 7136) that prohibits minors from using tanning beds, a 2021 bill (2021-H 5432A) to cover preventative colorectal cancer screenings, and a 2022 bill (2022-H 7587A) requiring private health insurers to cover biomarker testing.
“I am thankful to Representative Ackerman for introducing this legislation to make it easier to conduct medical research that involves data sharing,” said Dr. El-Deiry. “This is a minor edit of the existing law that ensures patient privacy while allowing important research to proceed.”
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