SHINE Act Authorizes $5M Annually for States to Improve Stillbirth Data Collection and Research

The Stillbirth Health Improvement and Education for Autumn Act of 2025—or the SHINE for Autumn Act—is a focused piece of public health legislation aimed at tackling a painful and often overlooked issue: stillbirth. Essentially, this bill is about getting better data so we can eventually get better answers and better prevention.

It works by amending the Public Health Service Act to create a new federal funding stream. The Secretary of Health and Human Services (HHS) is authorized to hand out grants totaling $5 million annually from 2026 through 2030 to states. This money is earmarked specifically for states to beef up their stillbirth surveillance programs and improve data collection. Think of it as federal seed money to help state health departments finally get the resources to track stillbirths with the same rigor they track other vital statistics.

The Data Upgrade: What States Must Do

If a state wants this funding, there are strict rules. They must use the money to improve how they gather information on stillbirths and associated risk factors. This means collecting measurable outcomes related to those risks, potentially using existing records like Fetal and Infant Mortality Review data. The goal is to build up local public health departments so they can actually analyze and make sense of this sensitive data.

Crucially, the bill takes privacy seriously. Any state receiving grant money must de-identify all collected data. That means no names, no addresses, no information that could link the data back to a specific patient or healthcare provider. For busy parents or anyone concerned about medical privacy, this is the bill’s critical safeguard. The data must also follow all federal and state privacy laws, ensuring that improved public health research doesn’t come at the cost of personal confidentiality.

Standardizing the Search for Answers

Beyond the state grants, the SHINE Act tasks the Secretary of HHS with creating national guidelines for state health departments and vital statistics offices. This is about standardizing the process so that data collected in California can be compared accurately with data collected in New York. These guidelines will instruct providers on how to collect information, including details on the woman’s clinical history, postmortem exams, and placental pathology—but only if the woman consents.

This standardization effort is vital for researchers. Right now, inconsistent state reporting makes it hard to paint a national picture of stillbirth causes. By creating a unified approach, this bill aims to give researchers the clean, comprehensive data they need to identify common risk factors that could lead to widespread prevention strategies.

Education and Empathy in Policy

An important part of the bill is its focus on education and community input. HHS is mandated to develop and publicly share educational materials about stillbirths and their risk factors, backed by a separate authorization of $1 million annually through 2030.

When creating these guidelines and materials, the Secretary must consult widely. This consultation list isn't just doctors and public health officials; it specifically includes national associations for healthcare professionals, organizations that help families with burial support, and, most importantly, individuals who have personally experienced a stillbirth and advocacy groups representing them. This ensures the policy and educational materials are grounded in the real-world experiences of the families most affected.

Finally, the bill requires HHS to post a comprehensive report online within five years summarizing all the educational guidelines created under this act. For families and advocates, this means a centralized, publicly accessible resource on stillbirth education and prevention will be mandatory.