The Global Alliance for responsible sharing of genomic and clinical data: an Asilomar conference for today?

All opinions are my own and do not necessarily reflect those of Novo Nordisk

I’ve been mulling over the recent announcement by several prominent genomics organizations of a set of standards for the generation and sharing of genomic data.  This is a fantastic development in the field, and one with great implications for the future of genomics data research.  It’s also particularly apropos given the recent news that the US government has been collecting internet-based metadata broadly, in a previously secret program to detect signs of terrorist activity.

People are waking up to the idea that we all produce data of all kinds, and that advances in technology now make gathering that data as easy as getting wet in the Seattle winter.  Whether that data is created digitally and automatically throughout our day-to-day life, or via an action as simple as sending a cheek swab to a company, there are some deep questions that are just beginning to be asked, by the government and other organizations, as to how the use of these data best serves the public good.

As a UC Berkeley graduate student in the late 80s and early 90s, I heard the lore about the Asilomar Conference on Recombinant DNA.  I think it was part of our standard indoctrination package, along with instructions on how to navigate Telegraph Avenue and reasons why Berkeley was superior to Stanford and UCSF.  That conference, in the early days of the age of gene splicing technologies, was an amazing example of self-regulation by a group of scientists who had the forbearance to actually stop and think about the possible implications of what they were doing,  The Asilomar conference led to a set of standards for the practice of recombinant DNA technology, and an overall greater mindfulness of what we were actually doing when we moved genes around among organisms.

The announcement of the Global Alliance has a similar flavor to me.  Again, technological advances have opened a huge window of potential research opportunities that were not possible before.  The implications, however, will be unclear for quite some time, and the effect that cheap genome (and other kinds of) sequencing will have on research, public health, ethics, medicine, and many other fields is unknown, other than that it will be huge.  We were already seeing the beginnings of chaos in terms of data repositories, standards, and practices, but this Alliance suggests that, at least at the level of key players like the Broad Institute and the Wellcome Trust, there is a commitment to taking  a step back and trying to find a good answer to the question of how to do this well, to best serve the public good, and to try to minimize harm.

I wish them luck.

One thought on “The Global Alliance for responsible sharing of genomic and clinical data: an Asilomar conference for today?

  1. Pingback: What does the Hela genome agreement imply for consent and genome data usage? | Biotech, Baseball, Big Data, Business, Biology...

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