The SHINE for Autumn Act creates a new federal vehicle to improve stillbirth research by directing the Department of Health and Human Services (HHS) to support state-level surveillance, capacity building, and collection of stillbirth risk-factor data. The bill also requires HHS to develop and publish guidance and educational materials and to consult widely with clinicians, public health officials, bereavement organizations, and people with lived experience.
The statute conditions grant awards on deidentified data collection consistent with federal and state privacy law, explicitly contemplates use of existing datasets (for example, state or sub-state Fetal and Infant Mortality Review data), and defines the state “vital statistics unit.” It further directs HHS to publish an educational-guidelines report within five years. The initiative aims to close gaps in stillbirth data that hinder prevention and bereavement support, but it leaves key design choices—scope of data collected, consent mechanics, and funding scale—to HHS and to participating states.
At a Glance
What It Does
The bill authorizes HHS to award grants to states for stillbirth surveillance, public-health capacity building, and collection and reporting of stillbirth risk factors. It requires that data collected be deidentified and consistent with applicable privacy law, mandates HHS-issued guidelines and public educational materials, and sets a statutory definition for a state ‘‘vital statistics unit.’"
Who It Affects
State health departments and their vital statistics units are the primary grant recipients and implementers; clinicians (obstetricians, midwives, pediatricians), public-health statisticians, pathology services, and bereavement support organizations are affected through data collection, reporting, and guidance. Researchers and federal program planners will use the standardized data the bill aims to produce.
Why It Matters
Stillbirth surveillance is uneven across states and medical settings; the bill attempts to standardize data collection and fill research gaps that impede prevention and bereavement care. For compliance officers and public-health leaders, the act creates new privacy, consent, and operational questions around collecting clinical, postmortem, and placental data at scale.
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What This Bill Actually Does
The bill inserts a new section into the Public Health Service Act authorizing HHS to make discretionary grants to states for three core purposes: (1) conduct stillbirth surveillance and gather data (including drawing from existing state or sub‑state Fetal and Infant Mortality Review datasets), (2) build state and local public‑health capacity to analyze stillbirths, and (3) collect and report quantifiable stillbirth risk‑factor data. The text frames these activities for ‘‘public health and research purposes’’ rather than for regulatory enforcement.
Grant recipients must collect and handle data in a way that prevents disclosure of individually identifying information and complies with federal and state privacy laws. The bill gives HHS authority to set guidelines and develop public educational materials, and it specifies that guidance may address collecting clinical history, postmortem examinations, and placental pathology data—in each case noting that collection should be with the consent of the woman who experienced the stillbirth.
HHS is directed to consult a long list of stakeholders while developing guidance, from professional societies and statisticians to bereavement service organizations and people with lived experience.Practically, the statute is permissive—HHS “may” award grants rather than being required to fund every state—and it ties programmatic work to modest, time‑limited authorizations. It also codifies what counts as a state vital statistics unit (the official body that keeps birth, death, and fetal death records).
Finally, the bill requires HHS to post an educational‑guidelines report on its public website not later than five years after enactment, folding the grant guidance and awareness materials into a publicly accessible product intended for clinicians, public‑health practitioners, and families.
The Five Things You Need to Know
The bill authorizes HHS to award grants to states for stillbirth surveillance, capacity building, and collection/reporting of risk‑factor data (the program is discretionary: the Secretary “may” award grants).
Grant awards must ensure data are deidentified and must not disclose individually identifying information; collection must otherwise comply with federal and state privacy laws.
The statute explicitly allows use of existing state or sub‑state Fetal and Infant Mortality Review datasets as data sources for surveillance and research.
Guidance drafted by HHS may cover collecting clinical history, postmortem examinations, and placental pathology information—but the bill conditions collection of those items on the consent of the woman who experienced the stillbirth.
HHS must publish an educational‑guidelines report on its public website no later than five years after enactment that incorporates the issued guidelines and awareness materials where appropriate.
Section-by-Section Breakdown
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Short title
Designates the act as the ‘‘Stillbirth Health Improvement and Education for Autumn Act of 2025’’ or the ‘‘SHINE for Autumn Act of 2025.’
Grants for surveillance, capacity, and risk‑factor collection
Authorizes HHS to award grants to states to conduct stillbirth surveillance, build public‑health capacity at state and local levels, and collect and report quantifiable risk‑factor data. The statute frames uses broadly for public health and research and explicitly references incorporating existing datasets such as state or sub‑state Fetal and Infant Mortality Review data, which are often locally managed and variable in scope.
Data deidentification and privacy condition
Makes receipt of funds conditional on collecting data in a manner that prevents disclosure of individually identifying information and complies with applicable federal and state privacy law. That shifts the operational burden to grantees to implement deidentification standards while still gathering useful variables for analysis.
Guidelines, educational materials, and stakeholder consultation
Requires HHS to issue guidelines to State health departments and vital statistics units on collecting stillbirth data from providers, and to develop public educational awareness materials. The provision lists a wide array of consultative stakeholders—professional societies, statisticians, mental‑health professionals, bereavement and burial support organizations, and people with lived experience—so guidance will be informed by clinical, statistical, and family‑support perspectives.
Definition of vital statistics unit
Defines 'vital statistics unit' as the entity responsible for maintaining official State (or political subdivision) records of live births, deaths, fetal deaths, and other vital events. This is practical: grants and guidance are targeted at the public offices that already manage birth and death reporting.
Educational guidelines report
Directs HHS to publish an educational‑guidelines report on a public HHS website no later than five years after enactment and to include, where appropriate, the guidance and materials developed under the new section. The report is the statute’s vehicle for consolidating lessons learned and making best practices publicly available.
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Explore Healthcare in Codify Search →Who Benefits and Who Bears the Cost
Every bill creates winners and losers. Here's who stands to gain and who bears the cost.
Who Benefits
- Families affected by stillbirth: better research and standardized guidance could improve cause identification, counseling, and bereavement resources over time.
- State public‑health departments and vital statistics units: eligible for federal grant funding to build analytic capacity, modernize data collection, and standardize reporting procedures.
- Clinical and academic researchers: improved, standardized datasets (including access to Fetal and Infant Mortality Review sources where permitted) would support epidemiologic studies and prevention research.
- Bereavement and burial support organizations: inclusion in the consultation list increases the likelihood that educational materials and guidance will address support and referral pathways for families.
- HHS and federal program planners: a centralized report and guidance create a consistent federal reference point for best practices and future program design.
Who Bears the Cost
- State health departments and vital statistics units: will need to allocate staff time, IT resources, and process changes to participate, deidentify data properly, and comply with reporting expectations.
- Clinicians, pathology labs, and hospitals: collecting expanded clinical history, postmortem exam results, and placental pathology (even with consent) will add documentation, coordination, and potential billing or staffing demands.
- HHS (program administration): must design grant criteria, issue guidance, run consultations, and produce the five‑year report—administrative costs beyond the modest authorized sums may fall to agency budgets.
- Privacy and compliance teams: stewards of deidentification and legal compliance will need to reconcile federal guidance with heterogeneous state privacy laws, potentially increasing legal and technical review workloads.
Key Issues
The Core Tension
The bill confronts a core dilemma: high‑quality, linked stillbirth data (including clinical and pathology details) is essential to understand and prevent stillbirths, but collecting and linking that information at scale risks revealing sensitive personal data and imposes real operational costs; the statute seeks to protect privacy and respect consent while relying on limited, discretionary funding—an approach that strengthens safeguards but may blunt the completeness and comparability of the data needed for prevention.
The statute balances the need for richer stillbirth data against privacy and consent, but that balance creates practical tradeoffs. Insisting on deidentified datasets and requiring consent for collecting sensitive clinical, postmortem, and placental information will protect individual privacy while likely reducing the completeness and linkage quality of the datasets that researchers prize.
In practice, deidentification can complicate the ability to link maternal clinical history, pathology, and infant data across sources—linkage that is often necessary to identify causal patterns.
The bill’s grant authority is discretionary and funded through modest, time‑limited authorizations; $5 million per year for the surveillance grants and $1 million per year for guidelines would need to be appropriated and distributed across states. That scale is unlikely to cover comprehensive upgrades in larger states or to standardize practices nationwide.
Moreover, relying on existing Fetal and Infant Mortality Review data introduces heterogeneity: those reviews vary widely in scope, legal protections, and accessibility across jurisdictions, which will complicate national aggregation and comparisons. Finally, the statute leaves important implementation choices to HHS—how to operationalize consent, what deidentification standards to require, how to prioritize awards—creating uncertainty for states and providers planning to participate.
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