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Senate committee approves newborn-screening rule updates; committee members ask about parental consent and religious exemption
Summary
The Health and Welfare Committee approved a rule update streamlining Idaho newborn-screening regulations and changing some internal department obligations from 'must' to 'should.' Senators asked whether parental informed consent applies; DHW said screening has been required by Idaho code since 1921 and that a religious exemption exists.
BOISE — The Idaho Senate Health and Welfare Committee approved a rule docket that updates the state's newborn-screening rules to remove outdated or duplicative language and improve readability, but several senators questioned whether parental informed consent is required under the revised text.
Jared Larson, Legislative and Regulatory Affairs Chief for the Department of Health and Welfare, presented docket 16-212-2401 (listed in the packet on page 83). He said the changes are a ZBR (zero-based review) that remove antiquated language and reorganize the chapter for clarity. Larson noted that some provisions change internal department wording from "must" to "should," and he told the committee these alterations were intended to describe internal laboratory processes rather than substantive changes in how the program operates.
Senator Shippy asked whether parents must give informed consent for newborn screening, citing a provision on page 87 that appears to require retesting of infants. Larson replied that newborn screening requirements have been in Idaho code since 1921 and said there is a statutory religious exemption that allows parents to opt out on that basis. "So, to answer directly to your question, is there an informed consent? I'm not certain if there is or not, but there is, there is the possibility established in Idaho law to, to opt out for religious reasons," Larson said.
Senator Wintrow asked whether each docket had been processed via negotiated rulemaking and whether any comments were received. Larson said this newborn-screening docket was developed through negotiated rulemaking, reviewed by medical doctors and program staff, and that "there were no negative comments on this rule." Wintrow also shared a follow-up account: she told the committee about a prior case in which advocacy led to adding a screening for a rare disease without new legislation, praising the department and the committee for the outcome.
The committee approved the docket on a voice vote after a motion by Senator Blalock and a second by Senator Van Orden.
