ETHIC Act

I 117TH CONGRESS 1ST SESSION H. R. 976 To amend the Public Health Service Act to expand, enhance, and improve applicable public health data systems used by the Centers for Disease Control and Prevention, and for other purposes. IN THE HOUSE OF REPRESENTATIVES FEBRUARY 11, 2021 Ms. CASTOR of Florida (for herself and Ms. UNDERWOOD) introduced the fol- lowing bill; which was referred to the Committee on Oversight and Re- form, and in addition to the Committee on Energy and Commerce, for a period to be subsequently determined by the Speaker, in each case for consideration of such provisions as fall within the jurisdiction of the com- mittee concerned A BILL To amend the Public Health Service Act to expand, enhance, and improve applicable public health data systems used by the Centers for Disease Control and Prevention, and for other purposes. Be it enacted by the Senate and House of Representa- 1 tives of the United States of America in Congress assembled, 2 SECTION 1. SHORT TITLE. 3 This Act may be cited as the ‘‘Ensuring Transparent 4 Honest Information on COVID–19 Act’’ or the ‘‘ETHIC 5 Act’’. 6 VerDate Sep 11 2014 03:17 Mar 06, 2021 Jkt 019200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6201 E:\BILLS\H976.IH H976 kjohnson on DSK79L0C42PROD with BILLS 2 •HR 976 IH SEC. 2. REQUIRED REPORTING BY STATE, LOCAL, TRIBAL, 1 OR TERRITORIAL GOVERNMENTS REGARD- 2 ING COVID–19. 3 (a) IN GENERAL.—As a condition on receipt of funds 4 through a covered grant or cooperative agreement, a 5 State, local, Tribal, or Territorial government shall agree 6 to direct the appropriate State, local, Tribal, or Territorial 7 governmental entity (including any public health depart- 8 ment thereof) to report to the Centers for Disease Control 9 and Prevention, with respect to the jurisdiction involved 10 and COVID–19— 11 (1) on a daily basis, the information listed in 12 subsection (d); and 13 (2) on a weekly basis, the information listed in 14 subsection (e). 15 (b) TRIBAL WAIVER.— 16 (1) REVIEW AND DISPOSITION.—Upon the re- 17 ceipt of a written request from a Tribal government, 18 or consortia thereof, for a waiver of the conditions 19 specified in paragraphs (1) and (2) of subsection 20 (a), the Director of the Centers for Disease Control 21 and Prevention shall, not later than 30 days after 22 receipt of such request, approve or deny it. 23 (2) DENIALS.—In the case of a denial of a re- 24 quest under paragraph (1), the Director of the Cen- 25 ters for Disease Control and Prevention shall— 26 VerDate Sep 11 2014 03:17 Mar 06, 2021 Jkt 019200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\H976.IH H976 kjohnson on DSK79L0C42PROD with BILLS 3 •HR 976 IH (A) provide to the requestor a written ex- 1 planation of the reasons for the denial; and 2 (B) provide the requestor with an oppor- 3 tunity to correct any deficiencies in the request. 4 (c) COVERED GRANT OR COOPERATIVE AGREE- 5 MENT.—For purposes of this section, a covered grant or 6 cooperative agreement is any grant or cooperative agree- 7 ment awarded under any of the following laws (including 8 any amendment made thereby): 9 (1) The Coronavirus Preparedness and Re- 10 sponse Supplemental Appropriations Act, 2020 11 (Public Law 116–123). 12 (2) The Families First Coronavirus Response 13 Act (Public Law 116–127). 14 (3) The CARES Act (Public Law 116–136). 15 (4) The Paycheck Protection Program and 16 Health Care Enhancement Act (Public Law 116– 17 139). 18 (5) The Consolidated Appropriations Act, 2021 19 (Public Law 116–260). 20 (d) DAILY REPORTING.—The information to be re- 21 ported daily pursuant to subsection (a)(1) consists of the 22 following, disaggregated to the county level if applicable: 23 (1) Demographic characteristics, including, in a 24 de-identified, disaggregated, and stratified manner, 25 VerDate Sep 11 2014 03:17 Mar 06, 2021 Jkt 019200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\H976.IH H976 kjohnson on DSK79L0C42PROD with BILLS 4 •HR 976 IH race, ethnicity, age, sex, geographic region, and 1 other relevant factors of individuals tested for or di- 2 agnosed with COVID–19, to the extent such infor- 3 mation is available. 4 (2) The number of adults with a confirmed case 5 of COVID–19 who are hospitalized in an intensive 6 care bed. 7 (3) The number of adults with a suspected case 8 of COVID–19 who are hospitalized in an intensive 9 care bed. 10 (4) The number of adults with a confirmed case 11 of COVID–19 who are hospitalized in an inpatient 12 care bed. 13 (5) The number of adults with a suspected case 14 of COVID–19 who are hospitalized in an inpatient 15 care bed. 16 (6) The number of children with a confirmed 17 case of COVID–19 who are hospitalized in an inten- 18 sive care bed. 19 (7) The number of children with a suspected 20 case of COVID–19 who are hospitalized in an inten- 21 sive care bed. 22 (8) The number of children with a confirmed 23 case of COVID–19 who are hospitalized in an inpa- 24 tient care bed. 25 VerDate Sep 11 2014 03:17 Mar 06, 2021 Jkt 019200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\H976.IH H976 kjohnson on DSK79L0C42PROD with BILLS 5 •HR 976 IH (9) The number of children with a suspected 1 case of COVID–19 who are hospitalized in an inpa- 2 tient care bed. 3 (10) Out of the maximum number of beds for 4 which hospitals are licensed to operate, the percent- 5 age occupied by confirmed or suspected COVID–19 6 patients. 7 (11) Total staffed hospital beds. 8 (12) The numbers of diagnostic and serological 9 tests administered for COVID–19, disaggregated 10 and stratified by— 11 (A) the type of test (molecular and anti- 12 gen); and 13 (B) the testing positivity rate of each type 14 of test. 15 (13) The median turnaround time for diag- 16 nostic tests stratified by molecular and antigen tests. 17 (14) The percentage of new cases of COVID– 18 19 linked to at least one other case and, if such new 19 cases are part of a known outbreak, identification of 20 such outbreak. 21 (15) The rate of transmission of COVID–19. 22 (16) The number of confirmed and probable 23 deaths as a result of COVID–19, de-identified and 24 VerDate Sep 11 2014 03:17 Mar 06, 2021 Jkt 019200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\H976.IH H976 kjohnson on DSK79L0C42PROD with BILLS 6 •HR 976 IH stratified by race, ethnicity, age, sex, geographic re- 1 gion, and other relevant factors. 2 (17) The number of residents in nursing homes 3 and assisted living facilities with a suspected or con- 4 firmed case of COVID–19. 5 (18) The number of residents in nursing homes 6 and assisted living facilities who have died from 7 COVID–19. 8 (19) The number of staff in nursing homes and 9 assisted living facilities with a suspected or con- 10 firmed case of COVID–19. 11 (20) Such other information as the Director of 12 the Centers for Disease Control and Prevention 13 deems to be relevant. 14 (e) WEEKLY REPORTING.—The information to be re- 15 ported weekly pursuant to subsection (a)(2) consists of the 16 following, disaggregated to the county level if applicable: 17 (1) New infections of health care workers not 18 confirmed to have contracted COVID–19 outside of 19 the workplace. 20 (2) The median time between collection of 21 specimens for diagnostic tests for COVID–19 and 22 isolation of cases. 23 (3) The percentage of new cases of COVID–19 24 among quarantined contacts. 25 VerDate Sep 11 2014 03:17 Mar 06, 2021 Jkt 019200 PO 00000 Frm 00006 Fmt 6652 Sfmt 6201 E:\BILLS\H976.IH H976 kjohnson on DSK79L0C42PROD with BILLS 7 •HR 976 IH (4) The following information, in a manner that 1 is de-identified, and is disaggregated and stratified 2 by race, ethnicity, age, sex, geographic region, and 3 other relevant factors, to the extent such informa- 4 tion is available: 5 (A) New suspected and confirmed cases of 6 COVID–19 per 100,000 individuals. 7 (B) The percent change in new suspected 8 and confirmed cases of COVID–19 per 100,000 9 individuals. 10 (C) The number of COVID–19 vaccine 11 doses administered. 12 (D) The number of individuals receiving a 13 first dose of COVID–19 vaccine. 14 (E) The number of individuals completing 15 a vaccination course for COVID–19. 16 (5) The number of COVID–19 vaccine doses re- 17 ceived by the reporting State, local, Tribal, or Terri- 18 torial government, disaggregated by supplier. 19 (6) The number of nursing home and assisted 20 living residents who have received a first dose of 21 COVID–19 vaccine. 22 (7) The number of nursing home and assisted 23 living residents who have completed a vaccination 24 course for COVID–19. 25 VerDate Sep 11 2014 03:17 Mar 06, 2021 Jkt 019200 PO 00000 Frm 00007 Fmt 6652 Sfmt 6201 E:\BILLS\H976.IH H976 kjohnson on DSK79L0C42PROD with BILLS 8 •HR 976 IH (8) Such other information as the Director of 1 the Centers for Disease Control and Prevention 2 deems to be relevant. 3 (f) PUBLIC POSTING OF REPORTED DATA.—On a 4 daily basis, the Director of the Centers for Disease Control 5 and Prevention shall make the information reported pur- 6 suant to this section, excluding personally identifiable in- 7 formation, publicly available on the website of the Centers 8 for Disease Control and Prevention. 9 (g) APPLICABILITY.—The condition on funding in 10 subsection (a) applies with respect to the obligation and 11 expenditure by the Federal Government of funds through 12 a covered grant or cooperative agreement on or after the 13 date of enactment of this Act, including with respect to 14 covered grants and cooperative agreements awarded before 15 such date. 16 SEC. 3. STUDY EXAMINING PUBLIC HEALTH DATA AND IN- 17 FRASTRUCTURE NECESSARY DURING AND 18 AFTER THE COVID–19 PUBLIC HEALTH EMER- 19 GENCY. 20 (a) IN GENERAL.—The Secretary of Health and 21 Human Services (in this section referred to as the ‘‘Sec- 22 retary’’) shall seek to enter into a contract with the Na- 23 tional Academies of Sciences, Engineering, and Medicine 24 (referred to in this section as the ‘‘National Academies’’) 25 VerDate Sep 11 2014 03:17 Mar 06, 2021 Jkt 019200 PO 00000 Frm 00008 Fmt 6652 Sfmt 6201 E:\BILLS\H976.IH H976 kjohnson on DSK79L0C42PROD with BILLS 9 •HR 976 IH not later than 30 days after the date of enactment of this 1 Act, under which the National Academies agree to conduct 2 a study with stakeholders from Federal agencies, State, 3 Tribal, Territorial, and local governments, research insti- 4 tutions, industry, and nonprofit organizations that would 5 review the current system for public health data infra- 6 structure and reporting and provide recommendations on 7 needed data and system improvements for future 8 pandemics and ongoing public health needs. 9 (b) SUBMISSION OF REPORT.—The contract under 10 subsection (a) shall require that the study under such sub- 11 section be completed, and a report on the resulting rec- 12 ommendations be submitted to the Secretary, the Com- 13 mittee on Health, Education, Labor, and Pensions of the 14 Senate and the Committee on Energy and Commerce of 15 the House of Representatives, not later than 12 months 16 after the date the contract was executed. 17 (c) STUDY TOPICS.—The contract under subsection 18 (a) shall require the study under such subsection to— 19 (1) review the current public health data sys- 20 tems and the reporting structure for Federal, State, 21 Tribal, Territorial, and local public health informa- 22 tion, including vital records; 23 (2) review current standards for reporting, 24 quality controls, and transparency of the data; 25 VerDate Sep 11 2014 03:17 Mar 06, 2021 Jkt 019200 PO 00000 Frm 00009 Fmt 6652 Sfmt 6201 E:\BILLS\H976.IH H976 kjohnson on DSK79L0C42PROD with BILLS 10 •HR 976 IH (3) examine data gaps and barriers to timely 1 and accurate reporting and identify ways to fill 2 those gaps; 3 (4) examine how systems can be accessed and 4 used by a wide range of users, including external re- 5 searchers; 6 (5) examine how different data systems interact 7 and how different data sources can be integrated; 8 (6) examine nontraditional data sources or al- 9 ternative data gathering methods that could be used 10 to complement traditionally collected data; 11 (7) identify needed improvements to the public 12 health data systems and structure, especially with 13 regard to the needs of Tribal systems; 14 (8) identify core elements of a ‘‘minimum data 15 set’’ that might be used for State population surveil- 16 lance, including demographic components that are 17 necessary to ensure health equity in public health 18 decision making; 19 (9) examine how surveillance systems can be ex- 20 plicitly designed to ensure underserved populations 21 (which may include racial and ethnic minorities, im- 22 migrants, individuals in nursing homes, other insti- 23 tutionalized populations, and individuals experi- 24 encing homelessness) are included in reporting; 25 VerDate Sep 11 2014 03:17 Mar 06, 2021 Jkt 019200 PO 00000 Frm 00010 Fmt 6652 Sfmt 6201 E:\BILLS\H976.IH H976 kjohnson on DSK79L0C42PROD with BILLS 11 •HR 976 IH (10) consider how traditional and nontradi- 1 tional data might be used to promote health equity 2 across the United States and reduce racial, Tribal, 3 and other demographic disparities; 4 (11) examine data gaps and barriers to col- 5 lecting, analyzing, and using demographic data to 6 characterize the COVID–19 pandemic for public 7 health action and research to improve public health 8 actions and identify ways to fill those gaps; and 9 (12) report on what is known based on existing 10 data about how COVID–19 is impacting subgroups 11 of the population with respect to access to testing, 12 treatment, and vaccination (hospitalization and ac- 13 cess to drugs and medical equipment), and health 14 outcomes (morbidity and mortality). 15 (d) DISAGGREGATION OF DATA.—To the extent fea- 16 sible, the contract under subsection (a) shall require data 17 to be disaggregated by race, ethnicity, age, gender, dis- 18 ability, geography, language, socioeconomic status, and 19 other factors. 20 (e) AUTHORIZATION OF APPROPRIATIONS.—To carry 21 out this section, there is authorized to be appropriated 22 $1,000,000, to remain available until expended. 23 Æ VerDate Sep 11 2014 03:17 Mar 06, 2021 Jkt 019200 PO 00000 Frm 00011 Fmt 6652 Sfmt 6301 E:\BILLS\H976.IH H976 kjohnson on DSK79L0C42PROD with BILLS