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LB 310

Provide an exemption from newborn screening for certain diseases or conditions

109th Legislature (2025-2026) Introduced by Ben Hansen

LB310 lets parents exempt their infant from newborn screening, with strict rules on specimen handling, reporting, privacy, and possible extra draw costs.

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Bill Summary · LB 310

Nebraska LB 310 — Exemption from Newborn Screening for Certain Conditions (Introduced Jan 15, 2025)

Purpose and Intent

LB 310 amends Nebraska’s newborn screening statute (Section 71-519) to provide an explicit exemption from newborn screening if a parent or guardian objects. The bill’s stated goal is to facilitate by omission the objection of a parent or guardian to newborn screening for their infant, while preserving certain related processes and controls around specimen handling and follow-up.

Key context:
- Introduced: January 15, 2025
- Committee: Health and Human Services
- Hearing date: January 30, 2025
- Principal Introducer: Senator Ben Hansen

What the Bill Would Change (Key Provisions)

  • Amendment to Section 71-519 (new exemptions and procedures):

    • The department would specify a list of newborn-screened conditions (originally including conditions such as phenylketonuria, galactosemia, MCAD deficiency, X-linked adrenoleukodystrophy, various mucopolysaccharidoses, spinal muscular atrophy, Pompe disease, congenital hypothyroidism, hemoglobinopathies, etc.). The bill details that the screening program and related testing processes apply to these conditions, with confirmatory testing if a presumptive positive result occurs.
    • The attending physician (or birth registrar) must collect and submit the prescribed blood specimens to the designated laboratory. If the birth is not attended by a physician, the birth registrar must ensure tests are performed per Department rules.
    • Laboratories must report presumptive and confirmed positive results within prescribed timelines to the physician, hospital/birthing facility, submitter, and the department.
    • The Department would regulate the retention, disposal, use, and disposal of blood specimens and related information, requiring compliance with federal standards, transparency, and privacy rules. Disposal must occur in the presence of a witness and with records maintained.
    • The Department may regulate use of specimens for public health purposes and for approved research, including potential charges related to evaluating and providing specimens for research (consistent with federal law).
    • The Department shall prepare materials explaining the testing program, the conditions listed, retention/disposal procedures, and potential use of specimens for research.

  • Parental Waiver/Exemption:

    • The bill adds explicit language that an infant may be exempt from screening if the parent/guardian objects, aligning with the objective to honor parental objections.

  • Optional Additional Blood Specimen:

    • The attending physician or birth registrar may offer an additional blood specimen to the parent/guardian at the time of the initial draw. If accepted, the extra specimen must be preserved without requiring special storage and may incur a fee not exceeding actual costs.

  • Post-Testing Communication:

    • Those responsible for performing tests must inform the parent/guardian of the tests and provide copies of written materials on request.

  • Financial and Liability Provisions:

    • Civil/criminal immunity for physicians, hospitals, birthing facilities, laboratories, or submitters for actions taken under the section, except in cases of gross negligence or intentional misconduct.

  • Other Provisions:

    • The bill repeals the original 71-519 section and creates a revised statutory framework, with ongoing regulation of retention, disposal, and use of specimens and related information.

Who Would Be Affected

  • Infants and Families: Parents/guardians could object to newborn screening, resulting in an exemption for their child from required screening.
  • Healthcare Providers: Attending physicians, birth registrars, hospitals, birthing facilities, and laboratories would implement new procedures for exemptions, specimen handling, reporting, and communication.
  • Public Health Department: The Department of Health and Human Services would oversee rules, retention/disposal, and permissible use of specimens and data, including potential research use.
  • Researchers/Researchers’ Proposals: The department may charge fees related to evaluating and supplying specimens for approved research.

Procedural and Timeline Highlights

  • Hearing scheduled: January 30, 2025
  • Legislative action: Introduced and referred to Health and Human Services for committee consideration
  • Status: Notice of hearing indicates the bill is in the early committee-stage for the 2025 session

Potential Impacts to Note

  • Strengthens parental rights to opt out of newborn screening while maintaining rigorous procedures for specimen management and public health oversight.
  • Maintains a framework for confidentiality, disposal, and limited permissible uses of specimens and data.
  • Could affect timelines for screening and follow-up if exemptions are exercised, including the handling of any required confirmatory testing and reporting in alternative pathways.

If you’d like, I can adapt this summary for a policy brief, press release, or legislative tracking sheet with a concise one-page version.

Compiled from official sources — confirm details with the bill’s official record.

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