THE SULSTON PROJECT
MAKING THE KNOWLEDGE COMMONS FOR INTERPRETING CANCER GENOMIC VARIANTS MORE EFFECTIVE
THE COMMONS
Genetic testing plays a crucial role in the diagnosis, prevention, and treatment of many cancers, but its power as a clinical tool is blunted by poor data sharing practices and a lack of standardization in how data are stored. A well functioning knowledge commons of sharing cancer-gene variants can aid cancer treatment and research. A commons of sorts is already forming, but it is fragile, not sustainable and evolving for decades. Fateful decision are being made in the early creation phase, framing the range of future choices.
OUR PURPOSE
We will carefully examine the challenges of developing a sustainable commons for inherited cancer-risk variants and generate policy solutions for challenges identified as most important and feasible to address by engaging expert stakeholders and relevant constituencies, including: data contributors and end-users, data generators, data sources, data facilitators, and professional data users. It will then present findings and policy options to audiences that can act on them. ( Read More About the Project )
PAYER
Payers can make the system better, and help it improve over time. Medicare and other federal payers should leverage their power to get laboratories to share data.
INCLUSION & EQUITY
Prioritizing equity and inclusion in hereditary cancer research and clinical practices is essential to reduce health disparities faced by underrepresented communities.
PATENT
Patent policy has affected genetic testing for inherited cancer risk
PATIENT STORIES
Lisa Schlager (Breast Cancer)
Lisa was in her early 30s, was recently married, and had a career that was just taking off. She was hesitant, as genetic tests looking for BRCA mutations were new and under-researched. As the next eldest woman in the family, she had the most at stake in her paternal aunt’s diagnosis.
The Dubin Family (Lynch Syndrome)
Dave Dubin always thought he may have colon cancer. His dad and grandfather had both had it in their lifetimes. In 1997, the cancer struck early. Dave was 29, but he knew the routine. Surgery, chemotherapy, colonoscopies—he was ready. However, he wasn’t ready to do it all over again, a decade after his first fight with cancer.
OUR RESEARCH
Considerations for Equitable Engagement of Hispanic/latino Populations With Hereditary Cancer Risk Testing
Hispanic/Latino populations face systemic barriers to accessing genetic testing and are underrepresented in cancer genomic variant commons. This case study explores the experiences of Hispanic/Latino communities with inherited cancer risk testing and the perspectives of multiple stakeholder groups on how to improve equitable engagement of Hispanic/Latino groups with genetic testing.
BRCActivism – a History of BRCA Patient Online Support Groups and Communities
This case study will go over the history of BRCA. The full significance of these genes as tumor suppressors involved in DNA repair was not yet known, but the discovery of cancer-associated variants in these two genes would go on to illustrate the role of complex genetic traits in breast and ovarian cancer risk.
Let’s work together to make a better Knowledge Commons.