[Federal Register Volume 84, Number 51 (Friday, March 15, 2019)]
[Notices]
[Pages 9538-9539]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 2019-04790]
-----------------------------------------------------------------------
DEPARTMENT OF HEALTH AND HUMAN SERVICES
National Institutes of Health
The National Institutes of Health ``Methods and Measurement in
Sexual & Gender Minority Health Research: Identifying Research
Opportunities''
ACTION: Request for comments.
-----------------------------------------------------------------------
SUMMARY: Sexual and gender minority (SGM) is an umbrella phrase that
encompasses lesbian, gay, bisexual, and transgender populations as well
as those whose sexual orientation, gender identity and expressions, or
reproductive development varies from traditional, societal, cultural,
or physiological norms. This includes Disorders or Differences in Sex
Development (DSD), sometimes known as intersex.
The Sexual & Gender Minority Research Office (SGMRO) at the
National Institutes of Health (NIH) has developed the document
``Methods and Measurement in Sexual & Gender Minority Health Research:
Identifying Research Opportunities'' pertaining specifically and
exclusively to methods and measurement research in SGM health research.
Experts in the field identified research opportunities related to
methods and measurement in SGM health research during a workshop held
in the Spring of 2018. The document reflects the content of the
discussion among participants at the Methods and Measurement in SGM
Health Research Workshop and does not represent an official position of
NIH or any other government agency. We would like to obtain comment on
the specifics of this document to consider for the purposes of
informing and enhancing its content.
DATES: To ensure consideration of your comments, responses must be
received by April 15, 2019.
ADDRESSES: Responses to this notice must be submitted electronically by
email to [email protected]. Please use the subject
``Comments: Measurement.''
FOR FURTHER INFORMATION CONTACT: Dr. Karen Parker, Division of Program
Coordination, Planning, and Strategic Initiatives, Office of the
Director, NIH, Building 1, Room 257, 1 Center Drive,
[[Page 9539]]
Bethesda, MD 20892, Telephone: 301-451-2055, Email:
[email protected].
SUPPLEMENTARY INFORMATION:
Background
In 2015, the National Institutes of Health (NIH) established the
Sexual & Gender Minority Research Office (SGMRO) in the Division of
Program Coordination, Planning, and Strategic Initiatives in the Office
of the Director. The role of the SGMRO is to: Coordinate sexual and
gender minority (SGM) health research activities across NIH; represent
NIH at conferences and events on trans-NIH activities focused on SGM
research; coordinate and convene conferences and workshops to inform
priority setting and research activities; collaborate with NIH
Institutes and Centers on the development of SGM health research
reports; manage information dissemination related to SGM research; and
work with NIH Institutes and Centers to leverage resources and develop
initiatives to support SGM health research.
The 21st Century Cures Act, signed into law on December 13, 2016,
included SGM-specific provisions, by amending the Public Health Service
Act, SEC. 404N. [283] POPULATION FOCUSED RESEARCH. Those provisions are
summarized as follows:
``The Director of the National Institutes of Health shall, as
appropriate, encourage efforts to improve research related to the
health of sexual and gender minority populations, including by:
facilitating increased participation of sexual and gender minority
populations in clinical research supported by the National Institutes
of Health, and reporting on such participation, as applicable;
facilitating the development of valid and reliable methods for research
relevant to sexual and gender minority populations; and addressing
methodological challenges.''
As a result of the growing need to develop better measures and
methods to accurately capture and understand the health of SGM
populations, the SGMRO hosted a workshop to identify research
opportunities in methods and measurement in SGM-related health
research. The planning committee included both NIH staff and extramural
researchers who designed the workshop agenda and developed a schema to
guide the discussions.
The workshop focused on three areas: Measurement of SGM status;
measurement of related constructs; and sampling. Extramural researchers
were invited who represented various research areas, stages of career,
populations of interest, and disciplines.
Community members, NIH staff, and other federal staff were also
included. Discussions focused around varying concepts to consider under
each of the domains identified by the planning committee; overarching
themes of intersectionality, lifespan, culture, and historical context
and cohort effects were considered throughout the discussions. The
concepts for consideration are highlighted below:
I. Measurement of SGM Status
[cir] Sexual Orientation (identity, behavior, attraction)
[cir] Gender Identity (cisgender, transgender, gender nonconforming,
non-binary)
[cir] Disorders or Differences of Sex Development/Intersex (medical
condition at birth vs. self-identified)
[cir] Fluidity (identity across contexts, time, and developmental
stage)
[cir] Assessment Modality (survey, report, collection from a provider,
on the phone, internet, paper)
[cir] Clinical Settings
II. Measurement of Related Constructs
[cir] Stigma (structural, interpersonal, individual or internalized)
[cir] Coming Out/Disclosure Process
[cir] Family Relationships
[cir] Cultural Competence/Humility in the Healthcare and Research
Settings (providers, facilities, etc.)
III. Sampling
[cir] Probability vs. Non-Probability Sampling
[cir] Sampling Across Demographics/Sub-populations
[cir] Small Sample Sizes
Information Requested
This notice invites public comment on the proposed research needs
and opportunities developed at the Methods and Measurement in Sexual
and Gender Minority Health Research Workshop. To inform the final
document, comment is requested on the following questions:
(1) What are the most important and relevant methods and
measurement-related research questions to members of the SGM community?
(2) What are the key methods and measurement-related research
questions missing from the research opportunities that should be
included?
Comments regarding this information collection are best assured of
having their full effect if received within 30 days of the date of this
publication. April 15, 2019.
General Information
All of the following fields in the response are optional and
voluntary. Any personal identifiers will be removed when responses are
compiled. Proprietary, classified, confidential, or sensitive
information should not be included in your response. This notice is for
planning purposes only and is not a solicitation for applications or an
obligation on the part of the United States (U.S.) government to
provide support for any ideas identified in response to it. Please note
that the U.S. government will not pay for the preparation of any
comment submitted or for its use of that comment.
Please indicate if you are one of the following: Grantee or other
PI, administrator, student, institutional leader or institutional
administrator, NIH employee, or other. If you are an investigator,
please indicate your career level and main area of research interest,
including whether the focus is clinical or basic. If you are a member
of a particular advocacy or professional organization, please indicate
the name and primary focus of the organization (e.g., research support,
patient care, etc.) and whether you are responding on behalf of your
organization (if yes, please indicate your position within the
organization). Please provide your name and email address.
Privacy Act Notification Statement: We are requesting your comments
for Methods and Measurement in Sexual & Gender Minority Health
Research: Developing a Research Agenda and Identifying Research
Opportunities (https://dpcpsi.nih.gov/sites/default/files/MethodsMeasures_Paper_508_FV.pdf). The information you provide may be
disclosed to NIH senior staff and those serving on the SGM Research
Coordinating Committee and to contractors working on our behalf.
Submission of this information is voluntary. However, the information
you provide will help to categorize responses by scientific area of
expertise, organizational entity or professional affiliation.
Collection of this information is authorized under 42 U.S.C. 203,
24 1, 2891-1 and 44 U.S.C. 310 I and Section 30l and 493 of the Public
Health Service Act regarding the establishment of the National
Institutes of Health, its general authority to conduct and fund
research and to provide training assistance, and its general authority
to maintain records in connection with these and its other functions.
Dated: March 8, 2019.
Lawrence A. Tabak,
Deputy Director, National Institutes of Health.
[FR Doc. 2019-04790 Filed 3-14-19; 8:45 am]
BILLING CODE 4140-01-P