Consensus Study Report

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This activity was supported by a contract between the National Academy of Sciences and the Social Security Administration (Contract #: 28321318D00060015; Task Order #28321323FDS030023). Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project.

International Standard Book Number-13: 978-0-309-71931-5
International Standard Book Number-10: 0-309-71931-3
Digital Object Identifier: https://doi.org/10.17226/27775
Library of Congress Control Number: 2024949281

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Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2024. Sex and gender identification and implications for disability evaluation. Washington, DC: The National Academies Press. https://doi.org/10.17226/27775.

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COMMITTEE ON SEX AND GENDER IDENTIFICATION AND IMPLICATIONS FOR DISABILITY EVALUATION

HORTENSIA DE LOS ANGELES AMARO (Chair), Distinguished University Professor, Senior Scholar on Community Health, Herbert Wertheim College of Medicine, Stempel College of Public Health and Social Work, Florida International University

HEIDI ALLEN, Associate Dean for Research, Associate Professor, Columbia University School of Social Work

WALTER BOCKTING, Professor of Medical Psychology (in Psychiatry and Nursing), Columbia University; Director, Program for the Study of LGBTQI+ Health, Columbia University Irving Medical Center

DON S. DIZON, Professor of Medicine and Professor of Surgery, The Warren Alpert Medical School of Brown University; Associate Director, Community Outreach and Engagement, Legorreta Cancer Center at Brown University; Director of Medical Oncology, Rhode Island Hospital

SCOTT HADLAND, Chief, Division of Adolescent and Young Adult Medicine, Mass General for Children; Associate Professor of Pediatrics, Harvard Medical School

RAKSHA JAIN, Professor, Department of Internal Medicine, Division of Pulmonary and Critical Care Medicine; Medical Director, Adult Cystic Fibrosis Program, University of Texas Southwestern Medical Center

DINUSHIKA MOHOTTIGE, Assistant Professor, Icahn School of Medicine at Mount Sinai; Adjunct Assistant Professor of Nephrology, Duke University

TONIA POTEAT, Professor, Duke University School of Nursing

ASA RADIX, Clinical Professor of Medicine, New York University Grossman School of Medicine; Associate Professor, Columbia University Mailman School of Public Health; Executive Vice President, Research and Education at the Callen-Lorde Community Health Center

JOSHUA D. SAFER, Professor of Medicine, Executive Director, Mount Sinai Center for Transgender Medicine and Surgery, Icahn School of Medicine at Mount Sinai

LOREN SCHECHTER, Professor of Surgery and Urology; Chief, Section of Gender-Affirmation Surgery; Director, Gender Affirmation Surgery, Rush University Medical Center

AMY TISHELMAN, Research Associate Professor, Department of Psychology and Neuroscience, Boston College

KATHRYN WHETTEN, Professor of Public Policy and Global Health, Director, Center for Health Policy and Inequalities Research, Codirector, Duke Sexual and Gender Minority Wellness Program; Research Director, Hart Fellows Program, Duke University

SELMA FELDMAN WITCHEL, Professor Emerita, UPMC Children’s Hospital of Pittsburgh, University of Pittsburgh School of Medicine

NANCY FUGATE WOODS, Professor Emerita, Biobehavioral Nursing and Health Informatics, University of Washington School of Nursing

Consultants to the Committee

PATRICIA M. OWENS, U.S. Government Accountability Office (retired)

DAVID WITTENBURG, Mathematica Policy Research, Inc.

Study Staff

MARY-BETH MALCARNEY, Study Director/Responsible Staff Officer, Program Officer

KAREN L. HELSING, Senior Program Officer

TAYLOR KING, Associate Program Officer

ADRIENNE FORMENTOS, Associate Program Officer

ADAEZE OKOROAJUZIE, Senior Program Assistant

SHARYL NASS, Senior Director, Board on Health Care Services

Reviewers

This Consensus Study Report was reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise. The purpose of this independent review is to provide candid and critical comments that will assist the National Academies of Sciences, Engineering, and Medicine in making each published report as sound as possible and to ensure that it meets the institutional standards for quality, objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process.

We thank the following individuals for their review of this report:

Although the reviewers listed above provided many constructive comments and suggestions, they were not asked to endorse the conclusions of this report, nor did they see the final draft before its release. The review of this report was overseen by ROBERT S. LAWRENCE, Johns Hopkins Bloomberg School of Public Health, and WALTER R. FRONTERA, University of Puerto Rico School of Medicine. They were responsible for making certain that an independent examination of this report was carried out in accordance with the standards of the National Academies and that all review comments were carefully considered. Responsibility for the final content rests entirely with the authoring committee and the National Academies.

Acknowledgments

The committee extends its sincere thanks to the many individuals who shared their time and expertise to support its work and inform its deliberations. This study was sponsored by the Social Security Administration, and we thank Vincent Nibali for his guidance and support of this important project, including verifying relevant technical content pertaining to the disability determination process for accuracy.

The committee benefited greatly from discussions with the individuals who presented at the committee’s open sessions: Sofia Ahmed, Ash Alpert, David Collister, Yee Won Chong, Katharine Dalke, Ethan Fechter-Leggett, Louise Fleming, Dinah Foer, Veronica Gomez-Lobo, Rachel Harrington, Noi Liang, Charlie Manzano, Lexi Matza, Alex McConnell, Vincent Nibali, Roman Ruddick, Carl Streed, Jr., Justin Tsang, and Jess Walters. Agendas for the public meetings are provided in Appendix A.

Our appreciation goes to the reviewers for their invaluable feedback on an earlier draft of the report and to the monitor and coordinator who oversaw the report review. The committee acknowledges the many staff within the Health and Medicine Division who provided support in various ways to this project, including Mary-Beth Malcarney (study director), Taylor King (associate program officer), Adrienne Formentos (associate program officer), Adaeze Okoroajuzie (senior program assistant), Karen Helsing (senior program officer), and Julie Wiltshire (senior finance business partner). The committee extends great thanks and appreciation to Sharyl Nass, senior director, Board on Health Care Services, who oversaw the project. The committee also appreciates Christopher Lao-Scott and Rebecca Morgan (senior librarians) for their research assistance and fact checking. The report

review, production, and communications staff all provided valuable guidance to ensure the success of the final product. Will Cole, Daniel J. Slack, Jiby Yohannan, Derek Chen, Nithya Krishnamurthy, and Joshua D. Safer drafted papers for the committee, which were valuable contributions to the narrative. Rona Briere and her staff are to be credited for the superb editorial assistance they provided in preparing the final report.

Contents

SUMMARY

1 INTRODUCTION

Transgender and Gender Diverse People and People with Variations in Sex Traits: Background, Prevalence, and Disability Experience

Social Security Administration: Disability Determinations

Study Charge and Scope

Study Approach

Organization of the Report

References

PART I: SEX AND GENDER DATA COLLECTION AND CLINICAL PRACTICE

2 CLINICAL CONCEPTIONS OF SEX AND GENDER

Sex and Gender Definitions

Gender Identity Terms

Terms for Individuals with Variations in Sex Traits

Sexual Orientation Terms

Legal and Administrative Terms

Diagnosis, Care, and Treatment Terms

Guiding Principles

Summary of Key Points

References

3 DATA ON SEXUAL ORIENTATION AND GENDER IDENTITY: COLLECTION AND USE IN THE CLINICAL PRACTICE OF MEDICINE

Unequal Care Delivery Impacting Transgender and Gender Diverse People and People with Variations in Sex Traits

Benefits of SOGI Data Collection

SOGI Data Collection: Best Practices

Barriers to SOGI Data Collection

ICD-10 Codes and Other Data

Future of SOGI Data Collection Within Electronic Health Records

Summary of Key Points

References

4 DATA ON SEX AND GENDER IDENTITY: COLLECTION ACROSS THE U.S. HEALTH CARE SYSTEM

SOGI Data Collection and Health Insurers: Medicaid, Medicare, Tricare, and Private Health Insurers

SOGI Data Collection Within Federal Health Systems

SOGI Data Collection Among Providers and Health Care Delivery Systems: State-Level Requirments and Incentives

Federal Surveys and SOGI Data Collection

Summary of Key Points

References

PART II: AFFIRMING TREATMENT AND CARE FOR TRANSGENDER AND GENDER DIVERSE PEOPLE AND PEOPLE WITH VARIATIONS IN SEX TRAITS

5 GENDER-AFFIRMING CARE FOR TRANSGENDER AND GENDER DIVERSE PEOPLE

Prepubescent Gender Diverse Children: Developmentally Appropriate Psychosocial Support

Gender-Affirming Care for People Who Initiate Medical Interventions During Puberty

Gender-Affirming Medical Care for People Who Initiate Gender-Affirming Hormone Therapy and Other Care After Puberty

Gender-Affirming Surgery and Postoperative Care

Nonmedical Modalities

Cancer Screening Considerations

Psychosocial Support Across the Lifespan

Variability of Practice

Summary of Key Points

References

6 COMMON CO-OCCURRING CONDITIONS AND IMPACTS OF GENDER-AFFIRMING CARE ON CHRONIC CONDITIONS IN TRANSGENDER AND GENDER DIVERSE POPULATIONS

Co-occurring Mental Health Conditions

Autism and Other Neurodevelopmental Diagnoses

Co-occurring Physical Health Conditions

Co-occuring Conditions and Multimorbidity

Summary of Key Points

References

7 CARE FOR INDIVIDUALS WITH VARIATIONS IN SEX TRAITS

Classifications of Variations in Sex Traits

Initial Management of Variations in Sex Traits

Hormone Treatment for People with Variations in Sex Traits

Surgical Interventions

Mental Health Interventions

Long-Term Health Concerns

Summary of Key Points

References

PART III: SEX, GENDER, AND DISABILITY DETERMINATIONS INTRODUCTION

8 CHRONIC RESPIRATORY DISORDERS

Chronic Respiratory Disease: Prevalence Among Transgender and Gender Diverse People and People with Variations in Sex Traits

Impact of Gender-Affirming Hormone Therapies on Lung Function

Impact of Chest Binding on Lung Function

Respiratory Disease and SSA Disability Determination

Selecting Appropriate Pulmonary Function Test Reference Sex for Transgender Adults: An Innovative Approach

Summary of Key Points

References

9 CHILDHOOD GROWTH FAILURE

Normal Diversity in Body Composition

Measurements of Growth in Pediatric Populations

Growth Measurment in Transgender and Gender Diverse Youth and Youth with Variations in Sex Traits

Growth Failure and SSA Disability Determination

Summary of Key Points

References

10 CHRONIC KIDNEY DISEASE

Chronic Kidney Disease: Prevalence Among Transgender and Gender Diverse People and People with Variations in Sex Traits

Pediatric Considerations for Chronic Kidney Disease

Chronic Kidney Disease and SSA Disability Determinations

Summary of Key Points

References

11 CANCERS OF THE REPRODUCTIVE SYSTEM

Prevalence of and Screening for Reproductive Cancers Among Transgender and Gender Diverse People and People with Variations in Sex Traits

Impact of Gender-Affirming Medical Care on People with Cancer

Guidelines: Decoupling Gender from Cancer

Cancer and SSA Disability Determinations

Summary of Key Points

References

12 CONSIDERATIONS FOR HIV MANIFESTATIONS SPECIFIC TO WOMEN

HIV Prevalence Among Transgender and Gender Diverse People and People with Variations in Sex Traits

Impact of Gender-Affirming Medical and Surgical Care on HIV

HIV Manifestations Specific to Women and SSA Disability

Summary of Key Points

References

13 CONSIDERATIONS FOR DISABILITY ADJUDICATION FOR TRANSGENDER AND GENDER DIVERSE APPLICANTS AND APPLICANTS WITH VARIATIONS IN SEX TRAITS

Overview of Experts Involved in Disability Determination

Guidance for Experts Involved in Disability Determinations

Summary of Key Points

References

14 OVERALL CONCLUSIONS

APPENDIX A Public Meeting Agendas

APPENDIX B Committee Member Biosketches

APPENDIX C Commissioned Paper: Physiological Sex Differences and the Effect of Gender-Affirming Hormone Therapy

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Boxes, Figures, and Tables

BOXES

1-1 SSA Disability Determinations: Five-Step Sequential Evaluation Process

1-2 Statement of Task

1-3 SSA Disability Listings with Sex-Specific Diagnostic Criteria

1-4 SSA Disability Listings Traditionally Associated with One Sex

3-1 Examples of Pronoun Selection Within the Medical Record

3-2 ICD-10 Codes Related to Care for Transgender and Gender Diverse People

3-3 ICD-10 Codes Related to Care for People with Variations in Sex Traits

3-4 ICD-10 “Z Codes” Related to Social Determinants of Health

3-5 Revised ICD-11 Codes for Gender Incongruence

3-6 Revised ICD-11 Codes for Variations in Sex Traits

3-7 Oregon Health Authority: Draft Recommendations for Anatomic Inventory Question

4-1 Medicare and Medicaid Coverage for Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI) Recipients

5-1 Common Masculinizing Hormone Therapy Regimens That May Be Referred to in Medical Records

5-2 Common Feminizing Hormone Therapy Regimens That May Be Referred to in Medical Records

7-1 Consensus Statement on Management of Intersex Disorders, 2006

7-2 Common Inquiries During Physical Examination to Determine Variations in Sex Traits

8-1 Disability Listings for Respiratory Disorders with Sex-Specific Diagnostic Criteria

9-1 SSA Childhood Disability Listings Related to Growth Failure

10-1 Disability Evaluation for Genitourinary Disorders with Sex-Specific Diagnostic Criteria under Listings 6.00 and 106.00

10-2 Variables Included in Estimated Glomerular Filtration Rate (eGFR) Calculation

11-1 Reproductive Cancers Included Under Listings 13.23, 13.24, 13.25, and 13.26

11-2 Disability Evaluation Under Social Security: Comparison of 13.15A and 13.23E

12-1 HIV Manifestations Specific to Women Under Listing 14.00F7

12-2 An Example of Gender-Inclusive Language Under Listing 14.00F7

FIGURES

5-1 Embryology of the external genitalia

5-2 Anatomy of common approaches to gender-affirming surgery

7-1 Overview of the multidisciplinary team that may be involved in the initial and ongoing care of people with variations in sex traits

7-2 Neuropsychological risks associated with Turner syndrome

8-1 Selection of pulmonary function test (PFT) reference sex in adults: Questions about gender identity and sex recorded at birth

8-2 Selection of pulmonary function test (PFT) reference sex in adults: Follow-up questions

8-3 Selection of pulmonary function test (PFT) reference sex in adults: Garment questions

9-1 Growth during preadult life history stages

9-2 Body mass index for age, boys and girls, ages 2–20 years

9-3 Comparison of age-adjusted, sex nonspecific body mass index (BMI) curves with Centers for Disease Control and Prevention (CDC) 2000 age- and sex-adjusted BMI curves

13-1 Diagram of experts involved in disability determinations

TABLES

2-1 Sex and Gender Terms Commonly Found in Medical Records

2-2 Gender Identity Terms Commonly Found in Medical Records

2-3 Terms Related to Variations in Sex Traits Commonly Found in Medical Records

2-4 Sexual Orientation Terms Commonly Found in Medical Records

2-5 Administrative Terms Commonly Found in Medical Records

2-6 Terms Commonly Found in Medical Records That May Relate to Care and Treatment for TGD People and People with VSTs, Along with Corresponding ICD-10 Codes

3-1 Examples of a Two-Step Question on Gender Identity and Sex Recorded at Birth

3-2 Examples of Questions That Ask Patients About Variations in Sex Traits

4-1 Questions on Sex Recorded at Birth and Gender Identity in Federal Health Insurance Programs

4-2 Examples of SOGI Questions from Various State Medicaid Applications (as of August 2023)

4-3 Sex Assigned at Birth and Gender Identity Questions Within Federal Health Care Delivery Systems

4-4 Oregon Health Authority: Draft SOGI Data Collection Recommendations

4-5 Gender Identity Question Included in Washington State’s Comprehensive Hospital Abstract Reporting System

6-1 Frequency of Health Outcomes in the STRONG Transgender Female (TF) Cohort Relative to Matched Reference (Ref.) Groups

6-2 Frequency of Health Outcomes in the STRONG Transgender Male (TM) Cohort Relative to Matched Reference (Ref.) Groups

6-3 Frequency of Cardiovascular Disease Health Outcomes in the STRONG Transgender Female (TF) Cohort Relative to Matched Reference (Ref.) Groups

6-4 Frequency of Cardiovascular Disease Health Outcomes in the STRONG Transgender Male (TM) Cohort Relative to Matched Reference (Ref.) Groups

6-5 Percentage of Medicare Beneficiaries with Cardiovascular Conditions

6-6 Adjusted Odds Ratio (aOR) of Cardiovascular Diseases for Transgender Veterans Seeking Veterans Health Administration Care, 1996–2013

6-7 Conceptual Frameworks and Explanatory Models Salient for Health for Transgender and Gender Diverse People

8-1 Disability Evaluation Under SSA Criteria: Pulmonary Function Tests Included Under Listings 3.02, 3.03, 3.04, 103.02, and 103.04

8-2 Results of Test for Diffusing Capacity of the Lungs for Carbon Monoxide (DLCO): Classification of DLCO

8-3 Listing 3.02A/B: FEV₁ or FVC Criteria for Chronic Respiratory Disorders, Any Cause Except Cystic Fibrosis

8-4 Listing 3.03A: FEV₁ Criteria for Asthma

9-1 Centers for Disease Control and Prevention: Clinical Growth Charts

10-1 Historical and Current Estimated Glomerular Filtration Rate (eGFR) Equations for Adults

13-1 Experts Involved in the Social Security Administration’s Disability Determination Process

Acronyms and Abbreviations