Genomic data sharing can lead to the kinds of medical breakthroughs patients have been waiting decades for, but it must be done ethically. The Neuro has joined a global alliance to help ensure data sharing is done in a way that respects patients’ rights and keeps them informed about how their data is used.
The Global Alliance for Genomics and Health (GA4GH) is an international, non-profit alliance formed in 2013 to accelerate the potential of research and medicine to advance human health. It brings together more than 600 leading organizations in healthcare, research, patient advocacy, life science, and information technology. The GA4GH community works together “to create frameworks and standards to enable the responsible, voluntary, and secure sharing of genomic and health-related data”, according to its website.
As a new member, The Neuro will help set the standard for health data sharing. Partner organizations share their expertise with each other, finding ways to maximize research impact while ensuring transparency, fair representation and patient consent. It also ensures all partners are following the rules.
“Patients will know that they're participating and collaborating with scientists that are honest, that are upholding the principles of responsible data sharing, and that they're advancing science,” says Sali Farhan, a genomicist and assistant professor at The Neuro, and its representative in GA4GH.
“Discovering a novel mechanism or a novel gene, or really any new discovery takes collaboration and people sharing their data.”
Genomic data sharing helps researchers find genes that play roles in disease, including neurological disorders. By sequencing large amounts of genomic data from thousands of patients, they can find genomic patterns that would be impossible to uncover in smaller datasets.
“What had happened in the past is that, unfortunately, scientists and clinicians would get quite greedy about the data, and then it became their data, as opposed to the patient's data,” she says.
Duty to the patient
Researchers need to keep patients informed about how their data is used, Farhan explains. They also have a duty to make sure their datasets reflect the general population by reaching to and encouraging the participation of previously underrepresented groups.
The scientist’s responsibility does not end when the patient agrees to participate in research. Patients should maintain rights to their data at all times, even after the data has been shared with other researchers or institutes. Patients should be able to withdraw their consent later if they choose.
“We have to respect that,” Farhan says. “And that can be costly. It's not always as simple as just taking them out of the study. Sometimes it can actually require some processing and computational resources to do so.”
It is challenges like these that the GA4GH alliance works to solve, to respect patient’s rights while ensuring their contribution has the greatest benefit on human health.
“The Neuro is an Open Science organization,” says Farhan. “Yet we can learn from the GA4GH partners, and also share with them what's been working for us. It's a lot to organize, but really the goal is to advance health in a responsible way.”