Global Alliance Is Formed to Share Genomic Data
This month, an international group of over 70 research and health-care organizations, academic centers, and medical societies, including ASCO, signed a letter of intent to form a global alliance to make medicine more effective by consolidating the world’s databases of genomic information. The goal of this global effort is to take genomic data that is currently stored in individual medical and research centers and make them available to clinicians and researchers from around the world.
The result of this global effort would give clinicians and researchers the ability to compare the genomes of millions of people and potentially allow physicians to better determine an individual patient’s genetic risk for specific diseases like cancer.
Mission Statement
In a white paper describing the mission of the alliance, the authors stated that despite the fact that the cost of genomic sequencing has been greatly reduced over the last several years, researchers and clinicians are not organized well enough to take advantage of the “explosion of information about the genetic basis of human health and disease.”
The authors wrote, “In principle, this wealth of genome sequence data should accelerate progress in biomedicine—making it possible to integrate genomic and clinical information to reveal the genetic basis of cancer, inherited disease, infectious diseases, and drug responses. Beyond research, the interpretation of individual genome sequences in clinical practice requires the widespread ability to compare each genome to a compendium of aggregated sequence and clinical data. In practice, however, we are not organized to seize this extraordinary opportunity—nor are we on a path do so.”
The mission of the global alliance is to create technical standards for managing and sequencing data in clinical samples and to develop guidelines to ensure privacy and ethics.
Privacy Risks
However, maintaining the privacy and anonymity of patients’ genomic data may be difficult. Yaniv Erlich, PhD, a Fellow at the Whitehead Institute for Biomedical Research in Cambridge, Massachusetts, published a report in Science earlier this year showing that it was possible to identify supposedly anonymous DNA donors through a combination of the person’s surname, age, and state in which the person lives.
The content in this post has not been reviewed by the American Society of Clinical Oncology, Inc. (ASCO®) and does not necessarily reflect the ideas and opinions of ASCO®.
