ANN ARBOR—The University of Michigan joins 70 leading health care, research and disease advocacy organizations from more than 40 countries in an international alliance to enable secure sharing of genomic and clinical data used to learn more about disease.
The organizations say the public interest will be served best if those who conduct such research work together to develop and promote technical and regulatory standards. Such an alliance, they note, will make it possible to share and interpret information in a manner that is effective and responsible.
"The ability to collect and analyze large amounts of genomic and clinical data presents a tremendous opportunity to learn about the underlying causes of cancer, inherited and infectious diseases, and responses to drugs," said David Altshuler, deputy director of the Broad Institute of Harvard and MIT.
"The University of Michigan is excited to be a founding partner in the creation of a common global information platform for the sharing of genomic and related clinical data," said James Holloway, vice provost for global and engaged education. "This work has significant potential to improve health care by making such data widely available so that creative minds all over the planet can better understand the genetic basis of human disease and develop effective interventions. This effort aligns perfectly with the University of Michigan's public mission and with our efforts to be globally engaged."
Martin Philbert, dean of the U-M School of Public Health said that many researchers in the various public health disciplines within the school have been "actively engaged in the investigation of genetic determinants of health and disease, and their broader intersections with physical, socioeconomic, behavioral, nutritional and environmental influences."
"We in the professions of public health have long been aware of the power of population data in helping to define and address disease processes in individuals," he said. "Provision of our high-quality data to the alliance, and access to those generated by the wider community of scholars increases exponentially the value and power of the possible analyses. The fusion of appropriately protected clinical data with genetic analyses will open new areas of investigation that will enable the development of scalable strategies for the improvement of health from the level of individual patients to populations."
The cost of genome sequencing has fallen one million-fold, alliance organizers say, and more people are choosing to make their genetic and clinical data available for research, clinical and personal use. Interpreting the data, however, requires an evidence base for biomedicine that is larger than any one party alone can develop.
Health care providers, disease advocacy organizations, research funders and biomedical research institutions from Africa, Asia, Australia, Europe, and North and South America, have joined together to form the nonprofit alliance. Each organization has signed a nonbinding letter of intent, pledging to work together to create a not-for-profit, inclusive, public-private, international, nongovernmental organization.
They have committed to furthering innovation by supporting the creation of open technology standards that will enable the development of interoperable information technology platforms that embody these principles and accelerate progress in biomedicine. The aim is that ultimately data will be stored in platforms built using the interoperable standards.
"This work has the potential to benefit the public health by assisting in the design and targeting of therapies and in improving disease risk prediction," said Michael Boehnke, the Richard G. Cornell Distinguished University Professor of Biostatistics, who was there in January when 50 colleagues from eight countries first met to discuss current challenges and opportunities in genomic research and medicine, and how groups could work together to foster medical progress.
Boehnke shared the proposal with Philbert, who then carried the plan to U-M President Mary Sue Coleman.
In signing the letter of intent, the organizations have committed to the global core principles:
- Respect (for the data sharing and privacy preferences of participants)
- Transparency (of governance and operations)
- Accountability (to best practices in technology, ethics, and public outreach)
- Inclusivity (partnering and building trust among stakeholders)
- Collaboration (sharing data and information to advance human health)
- Innovation (developing an ecosystem that accelerates progress)
- Agility (acting swiftly to benefit those suffering with disease)
Gonçalo Abecasis, the Felix Moore Collegiate Professor of Biostatistics at the School of Public Health, whose research focuses on the development of statistical tools and computational methods that enable studies of genetic variation and its connections to human disease, said the alliance is significant for a number of reasons.
"First, there is great power in numbers when studying genomics and clinical outcomes. With larger numbers, it is easier to identify the shared genomic patterns between individuals with disease, and to verify that these are absent in control individuals.
"Second, I believe we owe to the individuals who participate in research studies. By sharing data, we accelerate progress towards discoveries and cures and ensure that maximum benefits accrue from the samples and data that any individual contributes to a research study," Abecasis said.
"Done right, this could have a big impact for public health, especially for rare diseases and for minority populations where (often) the number of individuals in any one study is small and, without data-sharing, progress can be extremely slow."
List of partners: