Progress and Challenges in Sexual Orientation and Gender Identity Measurement in the First Year of the Trump Administration

A dossier of articles published in AJPH in August 2017 undertook a critical examination of a proposal by the federal Department of Health and Human Services’ Administration for Community Living to remove a sexual orientation question from the National Survey of Older Americans Act Participants (NSOAAP).¹ These articles asserted the importance of having reliable, comprehensive data on lesbian, gay, bisexual, transgender, and queer (LGBTQ) people to advance health policy and programmatic goals and presented research showing the feasibility of collecting data on small populations such as LGBTQ older adults. The draft NSOAAP survey—with the sexual orientation question deleted—was subject to public review, and Administration for Community Living ultimately received nearly 14 000 comments from individuals and organizations, the majority arguing that the question should be retained.² As a result of this extensive feedback, the agency reversed its decision and included a revised measure in the final survey, one that no longer conflated sexual orientation with measurement of a person’s gender identity. Researchers and advocates still rightly decried the lack of data to identify transgender older adults, but the agency’s reversal was nonetheless an important victory during a year of challenges for LGBTQ equality.

PLAYING POLITICS WITH SCIENCE

In the same month that the sexual orientation measure had been deleted from the NSOAAP, the Census Bureau again failed to include further study of sexual orientation and gender identity measurement in its initial report to Congress on the 2020 Census and American Community Survey. Over years of engagement with experts in demography and measurement science, members of Congress, and federal agency staff, LGBTQ advocates have argued that without inclusion in major government surveys like the American Community Survey, we would never truly achieve full and equal protection of the law or develop a comprehensive public policy response to meet the community’s needs. Sadly, it has since become clear that politics, not science, likely brought progress in this area to a halt. Inquiries from multiple members of Congress and investigative reporting revealed that drafts of the Bureau’s Subjects Planned for the 2020 Census and American Community Survey report included sexual orientation and gender identity as potential subjects. One draft, obtained by National Public Radio, echoed the themes covered in the AJPH dossier, noting that these data could

. . . aid in planning and funding government programs and in evaluating other government programs and policies to ensure they fairly and equitably serve the needs of all people. These statistics could also be used to enforce laws, regulations, and policies against discrimination in society.³

The Census Bureau reported in 2017 that Census data were used to allocate more than $675 billion across at least 132 federal programs, including health-related programs such as Preventive Health and Health Services, Maternal and Child Health, and Community Mental Health Services Block Grants.⁴ Having data to evaluate and target these benefits takes on heightening importance given evidence of health disparities and economic instability among LGBTQ people.

In response to criticisms, Trump Administration officials have cited a lack of need for sexual orientation and gender identity data and the absence of a statutory mandate to collect it. Yet these arguments fall flat in the face of their own agencies’ assessment of the value of these data for government programming and enforcement of LGBTQ people’s civil rights. These assertions also stand in stark contrast to the recent decision to add a citizenship question to the 2020 Decennial Census under the stated rationale of enforcing the Voting Rights Act of 1965 (Pub L No. 89-110), a law passed 15 years after this question was last asked on a Decennial Census. This decision was made over the recommendations of former Census directors from both parties, scientific experts, and Bureau advisors, who predict that the inclusion of such a question at this late date will depress response rates and threaten the accuracy of the Census count. In both cases, the Administration is circumventing existing processes to appropriately evaluate and test new questions without a strong defense of these changes. In doing so, there is significant risk to equitable allocation of federal resources and congressional apportionment by failing to reach hard-to-count populations, including LGBTQ people.

PROGRESS IN FITS AND STARTS

It is perhaps unsurprising that we have seen challenges to scientific integrity and stalled progress under the Trump Administration. The Department of Justice now argues against employment protections for LGBTQ people, agencies have removed tools and resources for schools and social service providers to treat LGBTQ people with dignity and respect, and the Administration has advanced a framework to undermine what protections do exist at the federal level under the guise of religious liberty. This realignment of priorities and a suite of new proposals, most recently exemplified by the establishment of the Conscience and Religious Freedom Division in the Office of Civil Rights at the Department of Health and Human Services, suggest the intention to expand the right to deny health care, threatening the health not only of LGBTQ people, but other marginalized communities as well. In the absence of comprehensive federal data, the evidence for the impact of these proposals may very well stay hidden.

Yet the victory on the NSOAAP suggests that progress can still be made toward improving the health and social status of LGBTQ people. After years of deliberate study, the Census Bureau has improved the way same-sex couples are counted in the Decennial Census, allowing respondents greater specificity in the way they describe their household relationships. This change was the direct result of recommendations made by the Interagency Working Group on Measuring Relationships in Federal Household Surveys, which evaluated measurement of same-sex relationships across the federal government.⁵ Similarly, the Sexual and Gender Minority Research Office at the National Institutes of Health recently released its FY2016 Portfolio Analysis, showing an 8% increase in funding of projects related to LGBTQ health compared with FY2015.⁶ This progress shows that consulting experts within and outside government, evaluating the literature base, funding additional research, leveraging knowledge across federal agencies, and conducting tests to ensure the validity of new measures results in evidence-based and community-relevant changes to large-scale surveys and funding opportunities. These cases provide strong examples of the federal government engaging the scientific process for the public good⁷ and should be models for the Trump Administration in making future determinations about the study of LGBTQ populations.