Report on Federal Health Data Collection and its Alignment with Sustainable Development Goals

Executive Summary

A September 2024 methodology study analyzing ten prominent U.S. federal health surveys reveals significant progress in collecting data on sexual orientation and gender identity, yet exposes a critical deficiency in measuring differences of sex development (DSD). These findings have profound implications for achieving key Sustainable Development Goals (SDGs), particularly SDG 3 (Good Health and Well-being), SDG 10 (Reduced Inequalities), and SDG 5 (Gender Equality). The systematic collection of comprehensive demographic data is foundational to identifying health disparities, formulating equitable policies, and ensuring that marginalized populations, including LGBTQ+ and DSD individuals, are not left behind in public health initiatives.

Analysis of Current Data Collection Practices

The review of federal health surveys highlights a varied landscape of data collection for sexual and gender minorities:

• Sexual Orientation (SO): Data collection is relatively well-established, with nine out of ten surveys including SO measures. Long-standing datasets from surveys like the National Health and Nutrition Examination Survey (NHANES) provide over two decades of valuable longitudinal data.
• Gender Identity (GI): Integration is more recent but rapidly expanding, with seven of ten surveys now including GI questions. However, methodological inconsistencies, such as varying approaches to capturing sex assigned at birth, present challenges for data harmonization and longitudinal analysis.
• Differences of Sex Development (DSD): A severe data gap exists, with only one surveyed program (All of Us) including a mechanism to identify individuals with DSD. This omission renders this population largely invisible within national health data, impeding research and targeted healthcare planning.

Implications for SDG 3: Good Health and Well-being

The core objective of SDG 3 is to ensure healthy lives and promote well-being for all. The study’s findings indicate that current data practices create barriers to achieving this goal for sexual and gender minorities.

1. Identifying Health Inequities: Without systematic data on SO, GI, and especially DSD, it is impossible to accurately measure the unique health challenges and disparities faced by these communities. This invisibility directly undermines the SDG principle of universality.
2. Informing Public Health Interventions: Effective health interventions must be evidence-based. The lack of comprehensive data prevents the design and evaluation of programs tailored to the specific needs of LGBTQ+ and DSD populations, hindering progress toward equitable health outcomes.
3. Monitoring Health Progress: The absence of standardized, longitudinal data makes it difficult to monitor trends in health and well-being over time, which is essential for assessing the impact of policies and ensuring accountability in public health.

Implications for SDG 10: Reduced Inequalities

SDG 10 calls for the reduction of inequality within and among countries. Inclusive data collection is a prerequisite for addressing the systemic health inequalities experienced by marginalized groups.

• Promoting Visibility and Inclusion: The act of collecting data is an act of recognition. Excluding questions about GI and DSD from federal surveys perpetuates the marginalization of these populations and reinforces existing inequalities in the healthcare system.
• Enabling Equitable Policy: To reduce health inequalities, policymakers require precise data to understand the scale and nature of the problem. The current gaps, particularly concerning DSD, prevent the formulation of targeted policies and the equitable allocation of resources.
• Empowering Communities: Representative data empowers communities to advocate for their health needs and hold institutions accountable for addressing disparities, a key component of reducing societal inequalities.

Advancing SDG 5 and SDG 16: Gender Equality and Inclusive Institutions

The evolution of survey methodologies also relates to broader goals of gender equality and institutional accountability.

• SDG 5 (Gender Equality): The increasing inclusion of nuanced gender identity questions, which differentiate between sex assigned at birth and current identity, is a critical step toward recognizing gender diversity beyond the binary. This supports the goal of achieving equality for all genders by making the health needs of transgender and nonbinary individuals visible.
• SDG 16 (Peace, Justice and Strong Institutions): Federal health surveys are instruments of public institutions. By adapting these tools to be more inclusive, federal agencies demonstrate a commitment to building effective, accountable, and inclusive institutions that serve all people. This strengthens the social contract and ensures that data infrastructure reflects the diversity of the population.

Conclusion and Recommendations

While federal health surveys have made commendable progress in capturing data on sexual orientation and gender identity, the near-total absence of data on differences of sex development represents a significant failure to uphold the principles of the Sustainable Development Goals. To advance health equity and ensure no one is left behind, the following actions are recommended:

1. Harmonize Survey Measures: Promote the standardization of validated questions for SO, GI, and DSD across all federal surveys to facilitate robust, comparable research that can inform national policy. This aligns with SDG 17 (Partnerships for the Goals).
2. Address the DSD Data Gap: Prioritize the development and implementation of ethically sound and community-informed methods for collecting data on DSD to illuminate the prevalence and health needs of this underserved population.
3. Leverage Data for Action: Utilize existing and future data to drive policy changes aimed at eliminating health disparities for LGBTQ+ and DSD communities, thereby making measurable progress toward SDG 3 and SDG 10.

1. Addressed Sustainable Development Goals (SDGs)

1. SDG 3: Good Health and Well-being

   • The article directly addresses this goal by focusing on the need to understand and address the “unique health challenges” and “health inequities” faced by the LGBTQ+ community and individuals with Differences of Sex Development (DSD). The entire premise is that collecting accurate data through federal health surveys is essential for improving health outcomes and ensuring “equitable healthcare delivery” for these populations.

2. SDG 10: Reduced Inequalities

   • This goal is central to the article’s theme. The text repeatedly highlights that LGBTQ+ and DSD populations have been “historically underrepresented and insufficiently studied.” The call for systematic data collection is framed as a necessary step to identify and address “critical disparities,” thereby promoting social inclusion and reducing inequalities in health outcomes based on sexual orientation and gender identity.

3. SDG 5: Gender Equality

   • The article connects to this goal through its detailed discussion on the measurement of gender identity. It emphasizes the need for more inclusive and nuanced data collection that captures the “complexity of gender diversity,” including transgender and nonbinary identities. By advocating for tools that accurately represent all gender identities, the article supports the broader aim of gender equality, which requires recognizing and addressing the specific needs of “gender minority subgroups.”

4. SDG 17: Partnerships for the Goals

   • This goal, particularly its targets related to data and monitoring, is highly relevant. The article is a methodological study on “data collection practices” and underscores the need for “high-quality, reliable, and disaggregated data.” The call for “standardization and stability of these measures” and “universally accepted, validated instruments” directly supports the objective of strengthening data systems to monitor progress on all SDGs for all segments of the population.

2. Specific SDG Targets

1. Target 10.2: By 2030, empower and promote the social, economic and political inclusion of all, irrespective of age, sex, disability, race, ethnicity, origin, religion or economic or other status.

   • The article directly supports this target by focusing on inclusion irrespective of “other status,” which includes sexual orientation and gender identity. The argument that without data, “critical disparities remain hidden,” demonstrates that data collection is the first step toward promoting the inclusion of these marginalized groups in public health policy and interventions.

2. Target 17.18: By 2020, enhance capacity-building support to developing countries, including for least developed countries and small island developing States, to increase significantly the availability of high-quality, timely and reliable data disaggregated by income, gender, age, race, ethnicity, migratory status, disability, geographic location and other characteristics relevant in national contexts.

   • Although the article focuses on the U.S., its methodological findings and call for data disaggregation by “other characteristics” (sexual orientation, gender identity, DSD status) are universally applicable to this target. The article’s core subject is the need to improve the availability of high-quality, disaggregated data to make marginalized populations visible in national statistics and policymaking.

3. Target 3.d: Strengthen the capacity of all countries, in particular developing countries, for early warning, risk reduction and management of national and global health risks.

   • The article implies a connection to this target by highlighting how the lack of data on specific populations hinders “epidemiological research and healthcare planning.” Understanding the unique health vulnerabilities and risks of LGBTQ+ and DSD populations through systematic data collection is a prerequisite for effective public health management and risk reduction for the entire population.

3. Implied Indicators for Measurement

1. Proportion of national surveys that include questions to identify sexual orientation.

   • The article explicitly measures this, stating, “Nine out of ten surveys currently include items addressing sexual orientation.” This serves as a direct indicator of progress in data collection.

2. Proportion of national surveys that include questions to identify gender identity, disaggregated by methodology (e.g., two-step questions vs. single question).

   • The article provides data for this indicator, noting that “Seven out of the ten analyzed surveys have introduced gender identity measures.” It further implies the need for disaggregation by discussing the methodological variability, such as including “separate items about sex assigned at birth.”

3. Proportion of national surveys that include questions to identify individuals with Differences of Sex Development (DSD).

   • The article points to a clear lack of progress on this indicator, stating that “only the All of Us research program includes a mechanism to identify individuals with DSD” among the ten surveys studied, highlighting a “glaring gap.”

4. Level of standardization and longitudinal stability of survey questions on sexual orientation and gender identity.

   • The article implies this as a crucial qualitative indicator. It notes that “sexual orientation data items have demonstrated relative stability,” while “gender identity questions are comparatively nascent and in flux.” Measuring the degree of standardization is presented as essential for “longitudinal continuity” and robust research.

4. Summary Table of SDGs, Targets, and Indicators

Source: bioengineer.org