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Committee adopts written-assurance requirement and approves H.293 on health-equity data sharing
Summary
The committee approved H.293, an act relating to health equity data reporting and registry disclosure requirements, after adopting an amendment that requires written agreements and institutional-review-board or privacy-board approvals before releasing confidential registry data to researchers.
A legislative committee voted to approve H.293, an act relating to health equity data reporting and registry disclosure requirements, after adopting an amendment that requires written assurances and institutional review board or privacy board approval before confidential registry data are released to researchers.
Katie MacDonough, Office of Legislative Council, told the committee that the draft (version 1.2) is on the committee website and that the change staff drafted was limited and technical. "They are highlighted in yellow," MacDonough said, and described language added to require written assurances and, in the case of researchers, "written evidence of approval of an institutional review board or privacy board." MacDonough also said the committee's changes preserved the federal protections despite removing an explicit cite to 45 CFR Part 46 by referencing the Code of Better Regulation.
Representative Steady said the changes reflected a request from the health department to clarify and enable sharing of data among health departments and researchers. A member who identified herself only as Anne raised concerns about the broader policy implications of releasing registry data to researchers, saying personal medical information may be understood differently by patients than by researchers and citing a prior institutional-review-board failure she had observed. Anne said she would nevertheless support the narrow technical change at this time.
The committee first held a show-of-hands straw poll on the amendment; the clerk then called a roll for the final vote on the bill as amended. During the roll call, members who were recorded voting "yes" included Representative Bishop, Representative Cole, Representative Donahue, Representative Estes, Representative Garfano, Representative McGuire, Representative McGill, Representative Nielsen, Representative Noyes, Representative Steady and Representative Wood. The amendment was accepted and the committee approved H.293 as amended (version 1.2).
Committee staff said the bill will be placed on the committee notice for subsequent consideration and procedural steps; committee members were told the bill "doesn't have to go to any other committee" and will be on the calendar later in the week.
The changes adopt a written-assurance requirement for disclosures from state registries and add explicit language requiring IRB or privacy-board approval when researchers request confidential registry information. Committee discussion emphasized that the amendment was intended to be a narrow, technical clarification requested by the Department of Health rather than a comprehensive policy change to research-disclosure law.
No formal dissenting vote on the final passage was recorded in the roll call excerpt; several members spoke during debate and questions about the amendment before voting.
