Stillbirth data surveillance initiative

Summary#

This bill (the SHINE for Autumn Act of 2025) directs the Department of Health and Human Services (HHS) to improve how stillbirths are tracked, studied, and explained to the public. It creates grant authority for states to collect better, standardized stillbirth data and requires HHS to issue guidance and public educational materials. It also requires a public report with educational guidelines within five years.

  • Main change: HHS may award grants to states to do stillbirth surveillance, build state and local capacity, and collect/report risk-factor data.
  • Data protections: Data must be deidentified and not reveal any patient or provider identity; collection of some clinical details requires the consent of the woman who experienced the stillbirth.
  • Guidance and outreach: HHS must issue guidelines to state health and vital records units on data collection and develop public educational materials. HHS may consult many professional groups and people with lived experience.
  • Money authorized: The bill authorizes $5 million per year for grants (2026–2030) and $1 million per year for guidelines and materials (2026–2030).
  • Reporting: HHS must publish a report with educational guidelines on a public website within five years.

What it means for you#

  • State and local public health agencies: May apply for HHS grants to set up or expand stillbirth surveillance systems, standardize data collection, train staff, and analyze risk factors. They will need processes to deidentify data and to obtain consent where required.
  • Vital statistics units (state record offices): Will be asked to follow new HHS guidelines on collecting and reporting fetal death information and other stillbirth data.
  • Health care providers (hospitals, doctors, midwives): May be asked to provide clinical history, placental pathology, or postmortem information for stillbirths when a patient gives consent. This could require additional forms, documentation, or training.
  • Women and families affected by stillbirth: The bill requires that personal data be deidentified and that some data be collected only with the woman’s consent. Educational materials and guidance are to be made publicly available; bereavement and burial-support organizations may be consulted in preparing materials.
  • Researchers and public health analysts: Could gain access to more standardized, deidentified state-level data to study stillbirth risk factors and outcomes.
  • HHS and federal staff: Will create guidelines, consult stakeholders, manage grant programs, and produce a public report within five years.

Expenses#

Estimated authorized spending: up to $30 million across fiscal years 2026–2030, as an authorization (not an appropriation).

  • Authorized amounts: $5,000,000 per year for 2026–2030 for state grants (total $25,000,000); $1,000,000 per year for 2026–2030 for guidelines and educational materials (total $5,000,000).
  • Actual cost: These are authorizations. Congress must appropriate funds in future budgets before money is spent.
  • Other likely costs: States, hospitals, and providers may face administrative and staffing costs to collect, deidentify, and report data and to train staff. HHS will incur program management costs, likely covered if appropriations are provided. Exact compliance or staffing costs are not detailed.
  • No other fiscal details: The bill does not say whether grants are competitive or formula-based, or whether states must provide matching funds.

Proponents' View#

  • The bill appears intended to improve understanding of stillbirth by making data collection more consistent and by funding state surveillance and research.
  • Supporters may argue that better data and standardized methods can help identify risk factors and guide prevention efforts.
  • Creating educational materials and guidance could help providers and families understand stillbirth causes, testing options (like placental pathology), and bereavement resources.
  • Consultation with clinicians, bereavement groups, and people with lived experience could make guidance and materials more useful and sensitive.

Opponents' View#

  • One concern is that the authorized funding is relatively small compared with the work of building nationwide surveillance and training; it may not be enough for wide, lasting state capacity building.
  • The requirement for patient consent to collect certain clinical details could limit how complete the data sets are, which may reduce the usefulness of studies.
  • States and health care providers will likely face extra administrative and training costs; the bill does not specify whether federal grants will cover all of those costs or require state matches.
  • The bill does not spell out grant rules, performance measures, timelines for implementation, or how deidentification standards will be enforced, leaving important details unclear.
  • Authorizations do not guarantee funding; actual spending depends on future appropriations.