Genetic Counseling for Trans* Populations: Development of Educational Material for Genetic Counseling Programs

Description

Transgender, or trans* is an umbrella term that refers to people whose gender identity differs from the sex they were assigned at birth. As gender minorities, the trans* community experiences disproportionate health disparities and discrimination in the healthcare setting. Genetic counselors may become part of a trans* individuals’ medical care team when indicated by a risk for genetic conditions. The role of a genetic counselor is to provide genetic information and culturally competent psychosocial support. A recent survey of genetic counselors found that less than half felt confident in their ability to counsel a trans* client, and multiple studies have established genetic counselors’ desire for more education on counseling trans* individuals. This study aims to increase genetic counselors’ knowledge about counseling trans* clients through the creation of educational resource materials for genetic counseling training programs accredited by the Accreditation Council for Genetic Counseling (ACGC). A Qualtrics survey was distributed to ACGC accredited program leadership to assess their current approach to trans* health education within their curricula and their receptiveness to additional resources to increase students’ exposure and comfort level counseling trans* patients in the future. Survey data revealed that 90% of responding programs provide education on genetic counseling for trans* individuals, and 85% felt that access to educational resource materials would be helpful. The results of the survey were used to direct what kind of educational content was created as part of this project. Based on survey results, four resources were created: 1) A series of case examples with roleplay opportunities, 2) An annotated list of resources for trans* patients including allied healthcare providers and legal resources, 3) An annotated list of resources for providers working with trans* clients, 4) An annotated list of peer-reviewed articles on genetic counseling for trans* populations. An educational resource guide was made to guide users of these materials as well. This study is relevant to public health by increasing educational materials available to genetic counseling programs and their students, with the intention of enhancing genetic counselors’ competency in working with trans* clients. Title Page Committee Page Abstract Table of Contents List of Tables List of Figures Preface 1.0 Introduction 1.1 Background and Specific Aims 1.1.1 Specific Aim 1 1.1.2 Specific Aim 2 2.0 Literature Review 2.1 Defining the population Table A: Relevant Terms 2.1.1 Sex, gender identity, and gender expression 2.1.2 Transgender and cisgender 2.1.3 Trans* identities and population of interest 2.2 Defining the problem 2.2.1 Health disparities 2.2.2 Competency of care from providers 2.2.3 Systemic barriers in healthcare 2.3 Identifying what is known: trans* healthcare 2.3.1 Clinical guidelines and educational resources for healthcare professionals 2.3.1.1 Clinical guidelines and educational resources from professional health organizations 2.3.1.2 Clinical guidelines and educational resources from trans* and patient advocacy organizations 2.3.2 Lessons from research within trans* populations 2.3.3 Persisting gaps in knowledge 2.4 Genetic counseling for trans* individuals: what we know 2.4.1 Disclosure of trans* status 2.4.2 Pedigree nomenclature 2.4.3 Language 2.4.4 Risk assessment 2.4.5 Psychosocial considerations 2.5 Addressing the problem: Creating educational resource materials for genetic counseling training programs 2.5.1 Developing educational resource materials 3.0 Manuscript 3.1 Background 3.1.1 Gender and trans* identities 3.1.2 Healthcare disparities in trans* populations 3.1.3 Trans* healthcare guidelines and best practices 3.1.4 Genetic counseling for trans* individuals 3.1.5 Development of educational resource materials 3.1.6 Purpose and specific aims 3.2 Materials and Methods 3.2.1 Survey design 3.2.2 Participants 3.2.3 Data collection and analysis 3.2.4 Creation of educational resource material 3.3 Results 3.3.1 Participant demographics Table 1: Participant Demographics 3.3.2 Current trans* genetic counseling education in coursework/curricula Figure 1: Percent response of types of curricular content on trans* genetic counseling issues within genetic counseling training programs. N=16 Table 2: Instructors for Trans* Genetic Counseling Curriculum Figure 2: Percent response of trans* genetic counseling topics included in program curriculum. N=16 Table 3: Barriers to Implementing Trans* Genetic Counseling Education 3.3.3 Perceived benefits of educational resources for trans* genetic counseling Figure 3: Percent response of educational resource materials perceived to be beneficial to genetic counseling programs (N=19) 3.4 Discussion 3.4.1 Trans* genetic counseling education 3.4.2 Perceived benefit of educational resource materials 3.4.3 Limitations 3.4.4 Future Directions 3.5 Conclusion 4.0 Research Significance to Genetic Counseling and Public Health Appendix A Invitation to Participate in Survey Appendix B Survey Appendix C Genetic Counseling for Trans* Individuals Educational Resource Materials Appendix C.1 Genetic Counseling for Transgender Individuals Educational Resource Guide Appendix C.2 Genetic Counseling for Trans* Individuals Clinical Case Studies/Roleplays Appendix C.3 Patient Resources for Trans* Clients Appendix C.4 Provider Resources for Working with Trans* Clients Appendix C.5 Peer-reviewed Articles on Genetic Counseling for Trans* Populations Appendix D IRB Approval Appendix E Survey Data Appendix Table A: Timing of Presentation of Trans* Genetic Counseling Materials Appendix Table B: Programs’ Rationale for Implementing Trans* Counseling Education Appendix Table C: Instructors Utilized for Trans* Genetic Counseling Issues Appendix Table D: Inclusion of Trans* Genetic Counseling in ACGC Accreditation Standards for Genetic Counseling Programs Appendix Table E: Programs’ Perception on Inclusion of Trans* Counseling Issues in Genetic Counseling Curriculum Appendix Table F: Perceived Benefit of Access to Educational Resource Materials Bibliography