42 U.S.C. § 300c–11 — Addressing sudden unexpected infant death and sudden unexpected death in childhood

submitted 82 years ago by Pub. L. 116-273 to r/title-42-THE-PUBLIC-HEALTH-AND-WELFARE · 945 words · no verdicts yet

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The Secretary may run programs to study and prevent sudden unexpected infant and child deaths, including a national death registry and grants to states and tribes. Grantees improve death investigations, train investigators, spread prevention information, and support grieving families. Congress authorized $12 million a year through 2026.

(a) In general: The Secretary may develop, support, or run programs to address sudden unexpected infant death and sudden unexpected death in childhood. This can include: (1) continuing to support the CDC's Sudden Unexpected Infant Death and Sudden Death in the Young Case Registry, and other death-reporting systems that include this kind of data - including systems the Health Resources and Services Administration supports - in order to (A) get more states and jurisdictions to participate in these registries and systems, and (B) make the registries and systems more useful, which may include (i) posting summary data on the HHS website quickly, while still protecting personal privacy as required by federal and state law, and (ii) sharing the underlying data with researchers, also while protecting privacy; and (2) giving grants or cooperative agreements to states, Indian Tribes, and Tribal organizations to (A) support fetal and infant mortality and child death review programs for these deaths, including setting them up at the local level; (B) improve how this data gets collected, including by (i) improving death scene investigations and full autopsies - including reviewing the person's clinical history and the circumstances of death, with extra testing where needed - and (ii) training medical examiners, coroners, death scene investigators, police, EMTs, paramedics, emergency room staff, and others who investigate these deaths; (C) find, develop, and put into practice the best ways to reduce or prevent these deaths, including practices that reduce deaths related to unsafe sleep; (D) increase voluntary donations of tissue or genetic material from autopsies - collected under federal or state law with a parent or guardian's informed consent - to research registries; (E) share information and materials with health care workers and the public about risk factors, which may include sleep-related risk factors; and (F) give affected families information, referrals, and peer or follow-up support. (b) Application: To get a grant or cooperative agreement under (a)(2), a state, Tribe, or Tribal organization must submit an application in whatever form, timing, and content the Secretary requires - including, where appropriate, information on how its work will be coordinated with other federally funded programs that reduce infant and child mortality. (c) Technical assistance: The Secretary must give technical assistance to any state, Tribe, or Tribal organization that gets a grant or cooperative agreement under (a)(2), to help them run the program correctly. (d) Reporting forms: (1) In general: The Secretary must, where appropriate, encourage the use of standard reporting forms - developed together with the CDC - to improve the quality of data going into the Registry and other relevant fatality reporting systems. (2) Update of forms: The Secretary must check whether the CDC's sudden infant death investigation reporting form needs updating, to work better with other fatality reporting systems that HHS supports, and must make those updates where appropriate. (e) Definitions: This section defines four terms. (1) "Sudden infant death syndrome" means a sudden unexpected infant death that stays unexplained even after a thorough investigation. (2) "Sudden unexpected infant death" means the sudden death of a baby under 1 year old that had no obvious cause when it was first discovered - this covers both deaths that later get explained and ones that stay unexplained (the unexplained ones are what's called sudden infant death syndrome). (3) "Sudden unexpected death in childhood" means the sudden death of a child between 1 and 17 years old that had no obvious cause when first discovered - again covering both later-explained and unexplained deaths (the unexplained ones are called sudden unexplained death in childhood). (4) "Sudden unexplained death in childhood" means a sudden unexpected death in childhood that stays unexplained after a thorough investigation. (f) Authorization of appropriations: Congress could appropriate $12,000,000 for each fiscal year from 2022 through 2026 to carry out this section.

the actual law source: uscode.house.gov ↗public domain

(a) In general

The Secretary may develop, support, or maintain programs or activities to address sudden unexpected infant death and sudden unexpected death in childhood, including by—

(1)

continuing to support the Sudden Unexpected Infant Death and Sudden Death in the Young Case Registry of the Centers for Disease Control and Prevention and other fatality case reporting systems that include data pertaining to sudden unexpected infant death and sudden unexpected death in childhood, as appropriate, including such systems supported by the Health Resources and Services Administration, in order to—

(A)

increase the number of States and jurisdictions participating in such registries or systems; and

(B)

improve the utility of such registries or systems, which may include—

(i)

making summary data available to the public in a timely manner on the internet website of the Department of Health and Human Services, in a manner that, at a minimum, protects personal privacy to the extent required by applicable Federal and State law; and

(ii)

making the data submitted to such registries or systems available to researchers, in a manner that, at a minimum, protects personal privacy to the extent required by applicable Federal and State law; and

(2)

awarding grants or cooperative agreements to States, Indian Tribes, and Tribal organizations for purposes of—

(A)

supporting fetal and infant mortality and child death review programs for sudden unexpected infant death and sudden unexpected death in childhood, including by establishing such programs at the local level;

(B)

improving data collection related to sudden unexpected infant death and sudden unexpected death in childhood, including by—

(i)

improving the completion of death scene investigations and comprehensive autopsies that include a review of clinical history and circumstances of death with appropriate ancillary testing; and

(ii)

training medical examiners, coroners, death scene investigators, law enforcement personnel, emergency medical technicians, paramedics, emergency department personnel, and others who perform death scene investigations with respect to the deaths of infants and children, as appropriate;

(C)

identifying, developing, and implementing best practices to reduce or prevent sudden unexpected infant death and sudden unexpected death in childhood, including practices to reduce sleep-related infant deaths;

(D)

increasing the voluntary inclusion, in registries established for the purpose of conducting research on sudden unexpected infant death and sudden unexpected death in childhood, of samples of tissues or genetic materials from autopsies that have been collected pursuant to Federal or State law and for which the parent or guardian has provided informed consent for inclusion in such registries;

(E)

disseminating information and materials to health care professionals and the public on risk factors that contribute to sudden unexpected infant death and sudden unexpected death in childhood, which may include information on risk factors that contribute to sleep-related sudden unexpected infant death or sudden unexpected death in childhood; or

(F)

providing information, referrals, or peer or follow-up support services to families who have experienced sudden unexpected infant death or sudden unexpected death in childhood.

(b) Application

To be eligible to receive a grant or cooperative agreement under subsection (a)(2), a State, Indian Tribe, or Tribal organization shall submit to the Secretary an application at such time, in such manner, and containing such information as the Secretary may require, including information on how such State will ensure activities conducted under this section are coordinated with other federally-funded programs to reduce infant and child mortality, as appropriate.

The Secretary shall provide technical assistance to States, Tribes, and Tribal organizations receiving a grant or cooperative agreement under subsection (a)(2) for purposes of carrying out the program in accordance with this section.

(d) Reporting forms

(1) In general

The Secretary shall, as appropriate, encourage the use of sudden unexpected infant death and sudden unexpected death in childhood reporting forms developed in collaboration with the Centers for Disease Control and Prevention to improve the quality of data submitted to the Sudden Unexpected Infant Death and Sudden Death in the Young Case Registry, and other fatality case reporting systems that include data pertaining to sudden unexpected infant death and sudden unexpected death in childhood.

(2) Update of forms

The Secretary shall assess whether updates are needed to the sudden unexpected infant death investigation reporting form used by the Centers for Disease Control and Prevention in order to improve the use of such form with other fatality case reporting systems supported by the Department of Health and Human Services, and shall make such updates as appropriate.

(e) Definitions

In this section:

(1) Sudden infant death syndrome

The term “sudden infant death syndrome” means a sudden unexpected infant death that remains unexplained after a thorough case investigation.

(2) Sudden unexpected infant death

The term “sudden unexpected infant death” means the sudden death of an infant under 1 year of age that when first discovered did not have an obvious cause. Such term includes such deaths that are explained, as well as deaths that remain unexplained (which are known as sudden infant death syndrome).

(3) Sudden unexpected death in childhood

The term “sudden unexpected death in childhood” means the sudden death of a child who is at least 1 year of age but not more than 17 years of age that, when first discovered, did not have an obvious cause. Such term includes such deaths that are explained, as well as deaths that remain unexplained (which are known as sudden unexplained death in childhood).

(4) Sudden unexplained death in childhood

The term “sudden unexplained death in childhood” means a sudden unexpected death in childhood that remains unexplained after a thorough case investigation.

(f) Authorization of appropriations

For the purpose of carrying out this section, there is authorized to be appropriated $12,000,000 for each of fiscal years 2022 through 2026.

Source credit: (July 1, 1944, ch. 373, title XI, § 1121, as added Pub. L. 116–273, § 2(2), Dec. 31, 2020, 134 Stat. 3352.)

history & why it existsrecord from the source credit

1944Enacted · Pub. L. 116-273 · 134 Stat. 3352

A history note hasn’t been published yet. The record shows enactment by Pub. L. 116-273 on 1944-07-01.

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