Title: The Future of Genomic Data: Promise and Peril
Abstract: When the idea of sequencing the human genome was independently proposed by three different scientists in 1985, the debate quickly focused on whether it was a fantasy or a real possibility. The completion of a reference genome in 2003 marked two transitions: one was to introduce an era of hyper-Moore's-Curve technological change, with DNA sequencing dropping in price and increasing in speed by 6 orders of magnitude in a decade. The second transition was a shift from viewing genomic data as an end—the reference sequence—and instead becoming a means for understanding the meaning of genomic variants. Sequencing has become ubiquitous, with millions of individual people having had their genomes sequenced in whole or in part, and tens of millions in prospect over the next decade. Sequencing has also pervaded the study of and biotechnical applications of living organs, not just humans. What does the future hold? One prospect is great promise, for example finally understanding the cellular mechanics of cancer, and indeed being able to detect and manage risk before cancer occurs. This would entail understanding with variants are disease-associated and which are not, a daunting technical task that necessarily involves sharing data globally among many kinds of institutions—nonprofit and for-profit, labs, clinicians, individuals, families, health systems, and public and private research institutions. But who will build and sustain this knowledge commons? There are also significant risks. The information is exquisitely private, bears not only on an individual but on others related to that individual, and uses are not just in medical decision-making, but also in DNA forensics, ancestry-tracing, population surveillance, and others. Real risks include online and face-to-face harassment, blackmail, and cyberbullying based on scraping of highly private online data. The privacy stakes are high, but protections weak and subject to corporate incentives that do not align with the rights and interests of the people putting their data online. Both the promises and perils will be illustrated by concrete and current example of sharing data about cancer-associated variants, a nascent global data commons that also confronts the real vulnerabilities and risks of currrent platforms and business practices.
Biography: Bob Cook-Deegan is a Professor in the School for the Future of Innovation in Society at Arizona State University. He studies biomedical innovation. He has been involved with BRCA since 1990, and was involved in early discussions about the gene-patent case, Association of Molecular Pathology vs. Myriad Genetics, that proceeded to the Supreme Court. As a policy advisor for this project, Bob would help this team to navigate a complex data-sharing policy landscape that is rapidly evolving.