May 29, 2018 — University of Houston Law Center Professor Barbara Evans addressed the opening session of the 2018 Curating the Clinical Genome Conference at Cambridge, U.K., Wednesday, stressing the importance of protecting the privacy and civil rights of people whose genetic data is used by researchers, doctors and others.
Genome curation is the process of reaching a scientific consensus about the role particular gene variants (mutations) may play in causing specific diseases and health conditions.
"The average person has 3 to 3.5 million gene variants, which are places where their own genome differs from an idealized human reference genome. Right now, we only know what a couple of hundred of those variants do, in terms of how they may affect the person's health," explained Evans, who holds joint appointments as the Alumnae College Professor of Law and as a Professor of Electrical & Computer Engineering at UH and is director of the Center for Biotechnology & Law.
"Curating the clinical genome is one of the grand scientific challenges of this century. The work is just getting started and will be ongoing for decades. It is data-intensive, so protecting privacy is a central challenge." she added.
Each year, leading medical geneticists from around the world come together to weigh the available evidence, try to reach consensus about what particular variants do, and plan research collaborations and data infrastructure they need for future phases of the work. The Wellcome Genome Campus near Cambridge University hosted this year's conference, which ran from May 23 - 25.
The planning committee chose Evans as the lone lawyer to speak at the conference based on an article about genomic civil rights she published in the "American Journal of Human Genetics" in January. Her talk likened genomic science to a magnificent glass house — an exercise in transparency that involves transparent (and sometimes unconsented) sharing of people's data with researchers, with regulators like the FDA, and with doctors who need data to inform health care decisions.
The challenge is to protect the civil rights of the literally millions of people whose sensitive medical and genomic information will be put on display in the genomic glass house. Evans traced how data privacy law has evolved since 1085 – 1086, when England collected data for its Domesday Book.
She expressed optimism that laws like the U.S. HIPAA Privacy Rule and the new EU General Data Protection Regulation have converged on a workable approach for reconciling transparency with privacy and civil rights — but only if the future debate centers pragmatically on what these laws actually do, as opposed to fantasizing what we wish they had done. She said it is time to harness existing laws and get serious about protecting people's civil rights.