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
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
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:
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
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.