High-speed and low-cost sequencing, combined with intense clinical interest, have led to widespread use of
multi-gene
testing for inherited variants conferring risk of cancer. Millions of genetic tests for inherited risk of
cancer have
been administered since commercial testing of BRCA1/2 variants began in 1996, and yet new variants continue
to be found.
Determining a variant’s clinical significance can be a challenge.
As hereditary cancer testing panels have transitioned to sequencing dozens of genes, rather than only
expressed segments of BRCA1/2,
the information needed to advance biomedical research and to determine the clinical significance of
cancer-gene variants vastly exceeds the capacity of any one lab or institution.
Interpretation of inherited cancer-gene variants depends on sharing information, that is, on a
well-functioning knowledge commons. A commons
of sorts is already forming, but it is fragile and may not be sustainable. It will still be forming while
this project unfolds; indeed the cancer
genomic variant commons will be evolving for decades. Yet fateful decisions are being made in the early
creation phase, framing the range of future choices.
We intend to study this process and give feedback to those making crucial decisions to improve the
effectiveness of the cancer genomic variant commons.
We intend to provide foresight to those building the commons we will live with for decades.
The Sulston Project is supported by a grant from the US National Cancer Institute: R01 CA237118, April
2019-March 2023.