Inclusion and Equity

Equity and inclusion are central to the Sulston Project’s mission of supporting efforts to improve information resources needed to interpret which genomic variants are associated with cancer risk—in all populations. We aim to integrate these principles into every step of our empirical work, including the experts we consult and topics we examine, to ensure the policy options we develop are fair and just.

Genomics and clinical genetics research initiatives have historically failed to include populations with non-European ancestry while also sometimes using information in ways that such groups consider exploitation. Lack of diverse representation in genetic databases and research efforts reduce potential for underrepresented populations to benefit from advances in genomics, in either advancement of knowledge and in clinical benefit (e.g., interpretation of cancer-associated variants). Efforts to genuinely consult and engage with excluded communities in genetic initiatives have often been “too little, too late.” Community engagement that is done only after research priorities have been identified and funds allocated amounts to little more than recruiting participants into projects with goals that are not driven by and may not align with community needs.

As we try to center equity and justice in our work, we acknowledge the gaps in our own team, and specifically, the lack of diversity among our leadership and staff. To address these gaps, we have taken concrete steps to create more level power structures among our team, support underrepresented scholars, and provide mentorship and training opportunities for junior collaborators. Such efforts include:

  • Amanda Gutierrez joined the Sulston Project team after she was awarded supplemental funds from NIH to study access to testing for inherited cancer risk among Hispanic/Latino populations and has helped organize a national network of community- oriented researchers and service providers.
  • Pooja Chitre, a doctoral candidate at ASU and associated with the Sulston Project, is conducting a study exploring the practices of genetic testing and data processing in India to inform local efforts to support access to the variant data required for effective clinical interventions and Indian representation in global databases while contributing to the larger discussion about a global cancer genomic commons.
  • Janis Geary, while not herself Indigenous, has established links with a network of Indigenous scholars seeking to implement CARE Principles for Indigenous data stewardship and promote Indigenous Data Sovereignty. Our philosophy has been to consciously avoid co-opting these research strategies in order to augment our own work, but rather to foster efforts for Indigenous Peoples to build institutions and capacity to partially counteract historical neglect.
  • Our team has collaborated with Lynette Hammond Gerido while studying African American women’s precision medicine information needs and racial disparities in genetic testing as a doctoral student. Our team continues to support her professional growth and development after earning a Ph.D. at Florida State University through mentorship and collaboration in her current position as an ethical, legal, and social implications (ELSI) postdoctoral research fellow at the University of Michigan.
  • The Sulston Project collaborates with BRCA Exchange, its community outreach efforts, and in particular its pilot study with Geisinger Health and the Alaska Native Tribal Health Consortium and Southcentral (Alaska) Foundation. That project explores how to leave most data in private and secure datasets under control of the originating institution, while also safely exporting data to enable interpretation of variants using software docker containers, which “move the software to data” rather than exporting data. That project also entails interviews to get views of patients and families in those health systems, and is led by Jill Holdren, KJ Surkan, and Melissa Cline.
  • The Sulston Project collaborates with and strongly supports the efforts of The Light Collective to establish patient-centric and effective data trusts and safe havens for online and in-person support groups. Our role is support, not ownership, control, or direction: Andrea Downing, Jill Holdren and the other co-founders and leaders of The Light Collective are striving to secure a sustainable framework well beyond a since grant cycle.

These efforts to collaborate with underrepresented scholars in the field and engage with historically underserved communities are just the beginning. One guiding principle in this work is to direct resources to institutions trusted by the affected constituencies to build capacity, rather than simply coopting scarce research resources into institutions that already have ample support. Going forward, we commit to continuing to elevate the voices of scholars from diverse professional and personal backgrounds, embed community stakeholders into our work, and listen intently so as to learn how to conduct inclusive research that advances justice and equity.