Aggregated News
Earlier this year Yaniv Erlich of the Whitehead Institute for Biomedical Research at M.I.T. sent bioethicists into a frenzy when he and his team uncovered the names of people whose anonymous genome profiles were published by the 1000 Genomes Project. Erlich and his co-workers found the identities entirely by connecting Y-chromosome data and other information from the database with publicly available records, including genealogy databases and lists of people living in particular locales.
Given the relative ease of linking seemingly protected genomic data to names, an expansive new medical data-sharing initiative is already fanning an ongoing debate over how far investigators need to go to protect the privacy of people who donate their DNA to research. This past month, over 70 leading medical and research organizations across 41 countries, including the National Institutes of Health (NIH) and The Wellcome Trust, declared their intent to form a global alliance by the end of this year to build a framework for sharing genomic and clinical data they collect from study participants.
Their aim is to mine the genomes and medical histories of...
Given the relative ease of linking seemingly protected genomic data to names, an expansive new medical data-sharing initiative is already fanning an ongoing debate over how far investigators need to go to protect the privacy of people who donate their DNA to research. This past month, over 70 leading medical and research organizations across 41 countries, including the National Institutes of Health (NIH) and The Wellcome Trust, declared their intent to form a global alliance by the end of this year to build a framework for sharing genomic and clinical data they collect from study participants.
Their aim is to mine the genomes and medical histories of...