The Global Alliance for Genomics and Health (GA4GH) and the International Neuroinformatics Coordination Center (INCF) have launched a new group to lay the foundation for connecting global neuroscience and genomic data.
GA4GH is an international nonprofit alliance formed in 2013 to accelerate progress in human health by expanding the responsible use of genomic data. The INCF Network serves as a forum to collaboratively coordinate global neuroinformatics activities that guide and oversee the development of standards, best practices, ontologies, and other unifying activities.
The new GA4GH and INCF Neuroscience Community seeks to unite collaborators around the world to share best practices and improve standards that will expand the responsible use of neuroscience data, including genomic data.
In a press release, GA4GH explained that progress has been slow in adapting medical care for neurodivergent people and neurological patients. In part, this is because researchers need many different types of data to answer neuroscience questions.
“To fully understand a single neurological patient or research participant, you need brain imaging, genomic sequences, gene expression data, sociocultural factors, test results showing how they metabolize drugs, their general health history and that of their loved ones.” family, and biomarker data such as health. and the weight. Then add a detailed analysis of their phenotype, or the traits, behaviors and symptoms they display,” said neuroscientist Randy McIntosh, in a statement. He is co-director of the GA4GH and INCF Neuroscience Community, vice-chair of the INCF Board of Directors, and a professor at Simon Fraser University. “Now multiply that amount of data by thousands of people, which is necessary to get real predictive power in a study,” he added.
It is unlikely that a single organization will collect or manage so much data. However, sharing data across groups is difficult, in part because managing someone’s data means taking great care to protect their privacy, wishes, and legal rights.
The group described one solution as “data visitation.” Instead of downloading a data file and transferring it to a distant scientist, data visitation involves a scientist visiting the data where it is located. To access as much data as possible, you need a federated network that allows you to study data hosted in many different locations at once.
The GA4GH and INCF neuroscience community plans to connect international partners to develop the standards, collaborations and systems needed to drive data visitation across a global network.
Groups such as the Brain Research International Data Sharing and Governance Program (BRIDGE), funded by Wellcome, a member of the Neuroscience Community, are studying how to properly follow laws and regulations when making data available worldwide. BRIDGE works with partners in Brazil, the United States, South Africa, Switzerland and the United Kingdom to develop resources to govern neuroscience data.
“Conditions and diseases do not respect borders. If we want the lives of people with neurological diseases to improve, we cannot simply look at the data of one hospital or even a country. We have to study various data from all over the world. With data visits powered by federation standards and the Global Alliance for Genomics and Health, clinicians and researchers can greatly expand their data set, while data stewards rest easy knowing they are protecting the rights and complying with regulations,” Peter Goodhand, CEO of GA4GH, said in a statement.
The new Neuroscience Community is one of several Communities of interest founded in recent years by GA4GH. These groups bring together global experts who are focused on a specific topic and who are eager to connect across borders and find a path to better use of data.
“Great work is being done around the world to understand neurological conditions, including their genomic underpinnings. The GA4GH and INCF Neuroscience Community will ensure that all those experts share best practices, develop interoperable standards, and make connections between data,” Angela Page, GA4GH director of strategy and engagement, said in a statement. “People with neurological conditions have advocated for and deserve a global data network that leads to better healthcare and quality of life.”