Sudden Unexpected Death Data Enhancement and Awareness Act

Summary: Sudden Unexpected Death Data Enhancement and Awareness Act - Amends the Public Health Service Act to require the Director of the Centers for Disease Control and Prevention (CDC) to continue activities relating to stillbirth, sudden unexpected infant death (SUID), and sudden unexpected death in childhood (SUDC). Requires the CDC to provide for collection of epidemiologic information on stillbirths, including through existing surveillance systems. Requires the CDC to develop and periodically update a standard data collection protocol and guidelines for postmortem stillbirth evaluation. Directs the CDC to provide for collection of sociodemographic, death scene investigation, clinical history, and autopsy information on SUID and SUDC cases through the review of existing records. Requires the CDC to develop and periodically update standard protocols for data collection and death scene investigation for SUID. Sets forth goals for SUID surveillance, including: (1) collecting information about the environmental and medical circumstances of death, (2) supporting multidisciplinary infant death reviews to classify and characterize SUID, and (3) facilitating information sharing to improve reporting of SUID. Requires the death scene investigation protocol to include the collection of infant and family medical history, circumstances surrounding death, the infant's sleep position and sleep environment, and any accidental or environmental factors associated with the death. Directs the CDC to develop and periodically update guidelines for standard autopsy protocols for SUID and SUDC. Allows the Attorney General to conduct and support training for medical examiners, coroners, and others regarding standard protocols for death scene investigation and autopsies.

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Sudden Unexpected Death Data 
Enhancement and Awareness Act''.

SEC. 2. STILLBIRTH AND SUDDEN DEATHS IN THE YOUNG.

    The Public Health Service Act is amended by inserting after section 
317L of such Act (42 U.S.C. 247b-13) the following:

``SEC. 317L-1. STILLBIRTH AND SUDDEN DEATHS IN THE YOUNG.

    ``(a) Stillbirth Activities.--The Secretary, acting through the 
Director of the Centers for Disease Control and Prevention, shall 
continue to carry out activities of the Centers relating to stillbirth, 
including the following:
            ``(1) Surveillance.--
                    ``(A) In general.--The Secretary shall provide for 
                surveillance efforts to collect thorough, complete, and 
                high-quality epidemiologic information on stillbirths, 
                including through the utilization of existing 
                surveillance systems (including the National Vital 
                Statistics System (NVSS) and other appropriately 
                equipped birth defects surveillance programs).
                    ``(B) Standard protocol for surveillance.--The 
                Secretary, in consultation with qualified individuals 
                and organizations determined appropriate by the 
                Secretary, to include representatives of health and 
                advocacy organizations, State and local governments, 
                public health officials, and health researchers, 
                shall--
                            ``(i) provide for the continued development 
                        and dissemination of a standard protocol for 
                        stillbirth data collection and surveillance; 
                        and
                            ``(ii) not less than every 5 years, review 
                        and, as appropriate, update such protocol.
            ``(2) Postmortem data collection and evaluation.--The 
        Secretary, in consultation with qualified individuals and 
        organizations determined appropriate by the Secretary, to 
        include representatives of health professional organizations, 
        shall--
                    ``(A) upon the enactment of this section, and not 
                less than every 5 years thereafter, review existing 
                guidelines for increasing and improving the quality and 
                completeness of postmortem stillbirth evaluation and 
                related data collection, including conducting and 
                reimbursing autopsies, placental histopathology, and 
                cytogenetic testing; and
                    ``(B) develop strategies for implementing such 
                guidelines and addressing any barriers to 
                implementation of such guidelines.
    ``(b) Sudden Unexpected Infant Death Activities.--The Secretary, 
acting through the Director of the Centers for Disease Control and 
Prevention, shall continue to carry out activities of the Centers 
relating to sudden unexpected infant death (SUID), including the 
following:
            ``(1) Surveillance.--
                    ``(A) In general.--The Secretary shall provide for 
                surveillance efforts to gather sociodemographic, death 
                scene investigation, clinical history, and autopsy 
                information on SUID cases through the review of 
                existing records on SUID, including through the 
                utilization of existing surveillance systems (including 
                the national child death review case reporting system 
                and SUID case registries).
                    ``(B) Standard protocol for surveillance.--The 
                Secretary, in consultation with qualified individuals 
                and organizations determined appropriate by the 
                Secretary, to include representatives of health and 
                advocacy organizations, State and local governments, 
                and public health officials, shall--
                            ``(i) provide for the continued development 
                        and dissemination of a standard protocol for 
                        SUID data reporting and surveillance; and
                            ``(ii) not less than every 5 years, review 
                        and, as appropriate, update such protocol.
                    ``(C) Goals for enhancing surveillance.--In 
                carrying out activities under this subsection, the 
                Secretary shall seek to accomplish the following goals:
                            ``(i) Collecting thorough, complete, and 
                        high-quality death scene investigation data, 
                        clinical history, and autopsy findings.
                            ``(ii) Collecting standardized information 
                        about the environmental and medical 
                        circumstances of death (including the sleep 
                        environment and quality of the death scene 
                        investigation).
                            ``(iii) Supporting multidisciplinary infant 
                        death reviews, such as those performed by child 
                        death review committees, to collect and review 
                        the information and classify and characterize 
                        SUID using a standardized classification 
                        system.
                            ``(iv) Facilitating the sharing of 
                        information to improve the public reporting of 
                        surveillance and vital statistics describing 
                        the epidemiology of SUID.
            ``(2) Standard protocol for death scene investigation.--
                    ``(A) In general.--The Secretary, in consultation 
                with forensic pathologists, medical examiners, 
                coroners, medicolegal death scene investigators, law 
                enforcement personnel, emergency medical technicians 
                and paramedics, public health agencies, and other 
                individuals and organizations determined appropriate by 
                the Secretary, shall--
                            ``(i) provide for the continued 
                        dissemination of a standard death scene 
                        investigation protocol; and
                            ``(ii) not less than every 5 years, review 
                        and, as appropriate, update such protocol.
                    ``(B) Content of death scene protocol.--The 
                protocol disseminated under subparagraph (A) shall 
                include information on--
                            ``(i) the current and past medical history 
                        of the infant;
                            ``(ii) family medical history;
                            ``(iii) the circumstances surrounding the 
                        death, including any suspicious circumstances;
                            ``(iv) the sleep position and sleep 
                        environment of the infant; and
                            ``(v) any accidental or environmental 
                        factors associated with death.
            ``(3) Guidelines for a standard autopsy protocol.--The 
        Secretary, in consultation with the Attorney General of the 
        United States, forensic pathologists, medical examiners, 
        coroners, pediatric pathologists, pediatric cardiologists, 
        pediatric neuropathologists, geneticists, infectious disease 
        specialists, and other individuals and organizations determined 
        appropriate by the Secretary, shall--
                    ``(A) develop guidelines for a standard autopsy 
                protocol for SUID; and
                    ``(B) not less than every 5 years, review and, as 
                appropriate, update such guidelines.
            ``(4) Training.--The Secretary, in consultation with the 
        Attorney General of the United States, may--
                    ``(A) conduct or support--
                            ``(i) training activities for medical 
                        examiners, coroners, medicolegal death scene 
                        investigators, law enforcement personnel, and 
                        emergency medical technicians or paramedics 
                        concerning death scene investigations for SUID, 
                        including the use of standard death scene 
                        investigation protocols disseminated under 
                        paragraph (2); and
                            ``(ii) training activities for medical 
                        examiners, coroners, and forensic pathologists 
                        concerning standard autopsy protocols for SUID 
                        developed under paragraph (3); and
                    ``(B) make recommendations to health professional 
                organizations regarding the integration of protocols 
                disseminated or developed under this subsection, and 
                training conducted or supported under this paragraph, 
                into existing training and continuing education 
                programs.
    ``(c) Sudden Unexplained Death in Childhood Activities.--The 
Secretary, acting through the Director of the Centers for Disease 
Control and Prevention, shall continue to carry out activities of the 
Centers relating to sudden unexpected death in childhood (SUDC), 
including the following:
            ``(1) Surveillance.--The Secretary, in consultation with 
        the Director of the National Institutes of Health, shall 
        provide for surveillance efforts to gather sociodemographic, 
        death scene investigation, clinical history, and autopsy 
        information on SUDC cases through the review of existing 
        records on SUDC, including through the utilization of existing 
        surveillance systems (including the Sudden Death in the Young 
        Registry).
            ``(2) Guidelines for a standard autopsy protocol.--The 
        Secretary, in consultation with the Attorney General of the 
        United States, forensic pathologists, medical examiners, 
        coroners, pediatric pathologists, pediatric cardiologists, 
        pediatric neuropathologists, geneticists, infectious disease 
        specialists, and other individuals and organizations determined 
        appropriate by the Secretary, may--
                    ``(A) develop guidelines for a standard autopsy 
                protocol for SUDC; and
                    ``(B) not less than every 5 years, review and, as 
                appropriate, update such guidelines.
            ``(3) Review of applicability of programs and activities.--
        Not later than 18 months after the date of enactment of this 
        section, the Secretary, acting through the Director of the 
        Centers for Disease Control and Prevention, and in consultation 
        with the Director of the National Institutes of Health, shall 
        complete an evaluation of the possibility of carrying out or 
        intensifying, with respect to SUDC, the types of programs and 
        activities that are authorized to be carried out under 
        subsection (b) with respect to SUID.
    ``(d) Report to Congress.--Not later than 2 years after the date of 
enactment of this Act, the Secretary, acting through the Director of 
the Centers for Disease Control and Prevention, shall submit to the 
Congress a report on the implementation of this section. Such report 
shall include--
            ``(1) the results of the evaluation under subsection 
        (c)(3); and
            ``(2) a description of any activities that--
                    ``(A) are being carried out by the Centers for 
                Disease Control and Prevention in consultation with the 
                National Institutes of Health relating to stillbirth, 
                SUID, or SUDC; and
                    ``(B) are in addition to the activities being 
                carried out pursuant to this section.
    ``(e) Definitions.--In this section:
            ``(1) The term `stillbirth' means a spontaneous fetal death 
        that--
                    ``(A) occurs at 20 or more weeks gestation; or
                    ``(B) if the age of the fetus is not known, 
                involves a fetus weighing 350 grams or more.
            ``(2) The terms `sudden unexpected infant death' and `SUID' 
        mean the death of an infant less than 1 year of age--
                    ``(A) which occurs suddenly and unexpectedly; and
                    ``(B) whose cause--
                            ``(i) is not immediately obvious prior to 
                        investigation; and
                            ``(ii) is either explained upon 
                        investigation or remains unexplained.
            ``(3) The terms `sudden unexplained death in childhood' and 
        `SUDC' mean the sudden death of a child 1 year of age or older 
        which remains unexplained after a thorough case investigation 
        that includes--
                    ``(A) a review of the clinical history and 
                circumstances of death; and
                    ``(B) performance of a complete autopsy with 
                appropriate ancillary testing.
    ``(f) Funding.--This section shall not be construed to increase the 
amount of appropriations that are authorized to be appropriated for any 
fiscal year.''.