dGTEx Project: Diversity, Equity, and Inclusion

What are your thoughts on tissue donation for research?

We want to hear your voice and thoughts about tissue donation research. Learn more about our family-focused study on this topic by clicking below. You might be eligible to join a small study designed to learn more about parents’ opinions about tissue donation research, whether or not you have donated to the dGTEx project.

dGTEx includes the U-SPEAK (Understanding Parents Expectations and Knowledge related to pediatric organ and tissue donation for research) study, led by researchers from Johns Hopkins All Children’s Hospital. This family-focused study seeks to better understand what parents think about donating children’s organs and tissues for genetic research after a child has passed. U-SPEAK is committed to learning directly from parents about what factors may impact their decision to donate or decline donation. Family voices are critically important and we hope that people who participate in U-SPEAK will help make things better for future families if they are ever asked to donate their child’s tissues.

How does this study work?

Parents who have either enrolled in dGTEx or declined to donate to dGTEx are eligible to participate in U-SPEAK. U-SPEAK participants will join a one-time focus group with other parents and will complete a brief online survey. The focus group will be an online video chat, like through Zoom. The focus group will take about 1.5 hours and participants will be financially compensated for their time.

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.