Community engagement in research: Intersex individual's perspectives of prenatal screening

Learn the importance of community engagement in intersex research from Louis Canavan and Bria Brown-King. Discover insights into how intersex voices shape prenatal screening conversations. It's crucial that research reflects the realities and needs of those being studied. When intersex perspectives are included, the findings are not only richer but also more relevant to the community.

Featured Article: Intersex community perspectives on prenatal sex chromosome screening: “It silences intersex”

Guest Bios:

Louis is an MGH IHP Genetic Counseling alum and is currently studying to be a high school biology/genetics teacher.He works as a paraprofessional at a middle school and is passionate about advocating for the LGBTQIA+ and neurodivergent communities.

www.linkedin.com/in/louiscanavan

Bria is a Black, queer, non-binary, and intersex person. Bria started doing intersex advocacy work as an intern with interACT, where they published articles for them, the ACLU, and Teen Vogue. In 2019, they became the first openly intersex person to speak about intersex issues on the steps of the Supreme Court. Bria now serves on multiple advisory boards, representing intersex people both nationally and internationally. Bria earned their bachelor’s degree in Political Science from York College of Pennsylvania and their Master’s in Nonprofit Management and Philanthropy from Bay Path University.

In this segment we discuss:

- How community-engaged research partnerships can improve studies involving intersex individuals and ensure lived experiences are represented.

- Intersex community perspectives on prenatal screening, including both potential benefits and concerns about how results may be used.

- The impact of healthcare provider language on patient experiences, reproductive decision-making, and perceptions of intersex traits.

- The importance of bodily autonomy, reducing stigma in healthcare, and improving provider education about intersex variations.

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