I 111th CONGRESS 2d Session H. R. 6109 IN THE HOUSE OF REPRESENTATIVES September 14, 2010 Ms. Baldwin (for herself, Mr. Waxman, Mr. Pallone, and Mrs. Christensen) introduced the following bill; which was referred to the Committee on Energy and Commerce A BILL To amend the Public Health Service Act to require the Secretary of Health and Human Services to ensure that each HHS health service program or HHS health survey provides, to the extent the Secretary determines appropriate and practicable, for the voluntary collection of data on the sexual orientation and gender identity of individuals who apply for or receive health services through such program, or who respond to such survey.
1.
Short title
This Act may be cited as the Health Data Collection Improvement Act of 2010.
2.
Data collection on sexual orientation and gender identity
Title XXXI of the Public Health Service Act (42 U.S.C. 300kk et seq.) is amended by inserting after section 3101 the following new section:
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Data collection on sexual orientation and gender identity
(a)
In general
The Secretary shall ensure that, beginning not later than 1 year after the dissemination of standards under subsection (c)(3), each HHS health service program and HHS health survey provides, to the extent the Secretary determines appropriate and practicable, for the collection of data on the sexual orientation and gender identity of individuals who apply for or receive health services through such program, or who respond to such survey. (b)
Provision and use of information
(1)
Voluntary basis
Provision of information by an individual in response to a collection pursuant to subsection (a) shall be only on a voluntary basis. (2)
Limitation
An agency or person that collects data from an individual pursuant to subsection (a) shall not use such data, or the decision of the individual not to provide such data, in any manner that adversely affects the individual. (c)
Data standards
(1)
Development
The Secretary, in consultation with the Office for Civil Rights of the Department of Health and Human Services and relevant data collection agencies, shall develop standards for the measurement of, and collection of information about, sexual orientation and gender identity. In developing the standards, the Secretary shall take into account recommendations made by the Institute of Medicine Committee on Lesbian, Gay, Bisexual, and Transgender Health Issues and Research Gaps and Opportunities. (2)
Inclusion of certain standards
The standards developed under paragraph (1) shall include standards— (A)for categorization of sexual orientation and gender identity, including questions to facilitate categorization; (B)for appropriate methods to collect information to maximize voluntary participation, preserve privacy and confidentiality, and avoid unintended negative consequences to an individual or program; and (C)that address the feasibility of data collection in different contexts and the appropriateness and analytical validity of collection within specific programs or types of programs. (3)
Dissemination
Not later than 1 year after the date of enactment of this section, the Secretary shall disseminate the standards developed under paragraph (1) to the offices and agencies of the Department of Health and Human Services, other Federal departments and agencies that administer health service programs, and other interested parties. (4)
Revision
The Secretary shall revise the standards developed under paragraph (1), and disseminate the revised standards, as the Secretary determines appropriate. (d)
Analysis
(1)
Departmental analysis
For each HHS health service program and HHS health survey, the Secretary shall— (A)analyze data collected under subsection (a) to detect and monitor health disparities based on sexual orientation and gender identity at the Federal and State levels; and (B)report to the Congress and the public the results of such analyses. (2)
Integration of data analyses
The Secretary shall integrate data analyses conducted under paragraph (1) with other activities of the Department of Health and Human Services that identify and analyze health disparities by race, ethnicity, sex, disability, primary language, or other population. (3)
Availability of data
The Secretary shall, as appropriate, enter into data use agreements between the Department of Health and Human Services (or offices and agencies thereof) and other governmental agencies and nongovernmental entities, pursuant to which the Secretary shall make available to such agencies and entities aggregated data (excluding any personally identifiable information about an individual) collected under subsection (a). (e)
Privacy and other safeguards
The protections and safeguards described in section 3101(e)(1) shall apply to data collected pursuant to subsection (a) of this section to the same extent and in the same manner as such protections and safeguards apply to data collected pursuant to section 3101(a). (f)
Definitions
In this section: (1)The term HHS health service program means a program conducted or supported by the Department of Health and Human Services through which direct preventive health or medical treatment services are delivered to individuals, either in a clinical or community setting. (2)The term HHS health survey means data collection efforts conducted or supported by the Department of Health and Human Services to obtain information directly from individual respondents for the purpose of aggregating statistical information.
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