dGTEx Project: Diversity, Equity, and Inclusion

What are your thoughts on tissue donation for research?

dGTEx includes the U-SPEAK study, led by Johns Hopkins All Children’s Hospital, that aims to better understand what parents think about donating children’s tissue for genetic research studies after their child’s passing. We want to learn directly from parents what might impact their decision to donate or decline donation. We think this is important because we want to make things better for future families if they are ever asked if they wish to donate their child’s tissues.

How does this study work?

Parents who choose to be in this study will participate in a one-time focus group with other parents. The focus group will be an online video chat, like through Zoom. The focus group will take about 1.5 hours.

For more information, please contact NDRI at 800-222-NDRI (6374).

How are Community Advisory Boards important to dGTEx goal of DEI?

The dGTEx study is unique in having community members helping inform every stage of the dGTEx study process by participating in our Community Advisory Boards (CABs). CABs are groups of stakeholders from around the country representing unique ideas, thoughts, and perspectives due to their membership diversity. dGTEx CABs exist in Pennsylvania, Washington, DC, and Texas. CABs are created with a deliberate focus on the members of each group, including diversity in race, ethnicity, occupation, roles in the community, gender, sexual orientation, or gender identity, and whether someone has ever been involved with receiving or donating tissues or organs. CABs also include many community leaders, religious/spiritual leaders, families who have donated a child’s tissues/organs, families who have received tissues/organs, and others who represent community organizations supporting children and families.

By creating CAB networks across the U.S. and connecting with them routinely throughout the project, the dGTEx study has the unique opportunity to foster relationships with community members and include their feedback and perspectives on the dGTEx at multiple levels. This approach centrally informs the ethical, legal, and social implications of the dGTEx project. It may ultimately help provide a framework for future studies involving end-of-life decisions for children and genomic research

How is the Pediatric Advisory Committee contributing to dGTEx?

The study also has a group of specialists in pediatrics with experience in end-of-life care that are part of the stakeholder group called the Pediatric Interspecialty Advisory Committee (PISAC). These members represent experts in pediatric organ and tissue donation, including pediatric intensive care doctors, bioethicists, research design specialists, psychologists, and families with experience in losing a child from across the country. The PISAC and CABs continually work together to inform and advise each phase of the dGTEx study.

Community engagement using the DEI 360⁰ approach offers a novel and unique opportunity to address underrepresentation in past studies that will promote the dGTEx vision of health equity in pediatric genomic and genetic research.