ISB News

ISB Joins Global Alliance

By Gustavo Glusman, ISB Senior Research Scientist

ISB has joined the Global Alliance for responsible sharing of genomic and clinical data. You can read the white paper here.

In the last couple of years, we (Family Genomics at ISB) moved from analyzing a handful of genomes (for the Miller Syndrome project) to analyzing over a thousand high-quality whole genomes we have in-house – in addition to the low coverage data from the 1000 genomes project, and the several thousand public exomes.

Our experience shows that the benefit derived from analyzing genomes does not grow linearly with the data set size, but actually even faster than that. Other institutions are accumulating thousands of exomes and whole genomes as well. If one could analyze all the genomes that have been produced to date in all institutions, the results would be significantly better than those derived from the current, small data sets.

We thus have a conundrum: we want and need to share the data, for the benefit of all, but we cannot simply release the genetic data, for privacy reasons.

Last February, I presented at AGBT 2013 on the benefits of multigenome analysis. I concluded my presentation with a call for action: let’s find creative ways to share certain aspects of the genetic data we all are accumulating, in a useful and responsible way. I was delighted to see later the announcement of the Global Alliance, which has precisely that goal. It was only natural for ISB to join this effort.

ISB’s involvement became official on June 28, 2013, after our president, Dr. Lee Hood, signed a letter of intent.

Read more about the Global Alliance from the June 5, 2013 The New York Times:

More than 70 medical, research and advocacy organizations active in 41 countries and including the National Institutes of Health announced Wednesday that they had agreed to create an organized way to share genetic and clinical information. Their aim is to put the vast and growing trove of data on genetic variations and health into databases — with the consent of the study subjects — that would be open to researchers and doctors all over the world, not just to those who created them.

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