The cost of genome sequencing has fallen dramatically in the last decade, ushering in a new era of personalized medicine and promising to yield more effective treatments for cancers and other serious diseases. As a result, an increasing number of people are opting to make their genetic data available for research, clinical and personal use. But as biological databases continue to grow with the influx of patients’ personal health information, meeting the challenge of interpreting this data in a way that’s useful in a clinical setting while protecting individuals’ privacy becomes imperative.
To confront this challenge, nearly 70 leading health-care, research and disease-advocacy organizations, including Stanford, have joined forces and created an international alliance dedicated to enabling secure sharing of genomic and clinical data. Members of the global non-profit announced this morning that they have each signed a letter of intent and committed to creating “an organization with responsible and transparent governance that will develop both technical and ethical standards for data sharing,” according to a release.
Stanford geneticist Carlos Bustamante, PhD, who is involved with the initiative, commented on the importance of the global alliance in accelerating biomedical research, saying:
A major goal of genomic medicine is understanding how common and rare genetic changes may contribute to health and disease. In order to assess the impact of a given change, we often need to aggregate data across many tens of thousands of genomes. A major goal of this initiative is building the data standards for securely sharing these genetic data in a way that enables patient-powered medicine while protecting privacy. Today, much of the data is in silos, be they individual universities, hospitals or research centers. We want to work together to aggregate these data in a way that enables new and powerful analyses while preserving privacy of research participants.
A strong advocate for increased representation of underserved populations in genetics studies, Bustamante added that he is “particularly keen to work on ways that engage minority communities and international partners.”
Formation of the alliance originated in January, when group of 50 colleagues from eight countries met to assess the current challenges and opportunities in genomic research and medicine and how to work together to foster medical progress. A white paper was circulated in June prompting organizations from Africa, Asia, Australia, Europe and North and South America to join the effort. Michael Stratton, director of the Britain-based Wellcome Trust Sanger Institute, explained in the release:
In recent years, many groups around the world have recognized the need for improved approaches to bring together genomic and clinical data, and some have made progress addressing this. But in coming together, and studying the challenges, we recognized that something was missing: an international body that spanned diseases and institutions, committed to furthering progress in an innovative and responsible fashion.
Looking toward the future, the alliance is now inviting others, including for-profit organizations, to join its ranks and develop a “common framework, enabling learning from data while protecting participant autonomy and privacy.”
Stanford bioethicist and law professor Hank Greely, JD, who participated in the January meeting, noted that although the initiative is just launching, it offers the best approach for sharing genomic and clinical data, while protecting privacy of participants. He said:
The global alliance holds the promise of an effective way to share genomic and clinical data that is critically important for medicine, while respecting the interests of the men and women that data describes. Both with respect to data sharing and to participant interests, the global alliance is a huge advance over our current “system,” which is, at best, a bedraggled patchwork of often inconsistent pieces. The global alliance is still being born; it will, no doubt, be a work in progress for a long time. But at least it offers the hope of real progress, in genomic medicine and in research participants’ rights.
Previously: Stanford researchers use data mining to show safety of peripheral artery disease treatment, Atul Butte discusses why big data is a big deal in biomedicine, Transforming personalized medicine into the new standard of care, Stanford geneticist talks tracking biological data points and personalized medicine and Scientists announce the completion of the ENCODE project, a massive genome encyclopedia