Community Voices

Incorporating Stakeholder Feedback

Stakeholders will be involved in the SMaHT study throughout all project phases, allowing for direct input on key decisions in a timely and responsive manner. Stakeholders will also inform the SMaHT Project on strategies that may allow for a greater diversity of participants, which may promote equity in the benefits of this project. Community engagement using the DEI 360⁰ approach offers a novel and unique opportunity to address underrepresentation in past genetics studies. To understand more about SMaHT’s DEI 360⁰ approach please visit Our Mission page.

SMaHT Community Advisory Board (CAB)

CABs are groups of stakeholders from around the country representing unique ideas, thoughts, and perspectives due to their membership diversity. 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, gender identity, lived experiences, and whether someone has ever been involved with receiving or donating tissues or organs.

By creating CAB networks across the U.S. and connecting with them routinely throughout the project, the SMaHT study has the unique opportunity to foster relationships with community members and include their feedback and perspectives on the SMaHT study at multiple levels. This approach centrally informs the ethical, legal, and social implications of the SMaHT project.

As a brand new and first-time grandparent, I am blessed with seeing a life unfold before me. When I look into those big, round eyes of our six-month-old grandbaby, I see a world of potential and hope and pray that she will thrive for a dozen decades. But as a researcher, I know all too well that her health is shaped by factors we really don’t yet understand. Research allows us to understand how factors like genetics, stress, and discrimination can affect health. Research can also tell us what can be done about these issues. A new generation of researchers—people who are trying to make up for bias and exclusion- can make a difference in finding out why we get sick and what to do about it for all people. My dream is to have every single baby out there live a long and healthy life. Supporting research is the best chance we have to make this dream a reality.

Multi-Disciplinary Specialty Committee (MDSC)

The study also has a group of stakeholders who are specialists in a range of relevant areas called the MDSC. The MDSC and CAB continually work together to inform and advise each phase of the SMaHT study. The MDSC is comprised of professionals (e.g., physicians, psychologists, and pastoral care providers) and other stakeholders (e.g., community members at large) who represent diverse professional and cultural backgrounds and experiences.

The MDSC is a racially, ethnically, geographically, and gender-diverse group of people who reflect a range of perspectives, ideas, and voices. Leveraging the knowledge and skills of this team enables us to provide the wider SMaHT team with insights and guidance.

My involvement in the SMaHT initiative through the Multidisciplinary Specialty Committee (MDSC) is deeply meaningful. The MDSC is dedicated to centering the family to ensure their experiences with the study are respectful and thoughtful. Above all else, SMaHT and the MDSC honor the generosity of the donation of a loved one’s tissues. This initiative is scientifically valuable, not just for the depth of research into the role of somatic mosaicism in human health conditions, but because of the inclusive nature of the recruitment that will allow representation of all subjects of diverse backgrounds. SMaHT is genuinely about the study of somatic mosaicism across ALL humans and their tissues.