What would you want to do with genome sequence data?

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

In the same issue of Nature that reported the HeLa sequence and the NIH agreement, Martin Bobrow of the University of Cambridge wrote a column discussing how we as a society choose to balance individual privacy and public good that arises from making data gathered from private samples public.

We are entering a strikingly different period of biological and biomedical research, as a number of different areas of research and technology are reaching a critical point of cross-fertilization.  Moore’s law has resulted in computers of amazing power that can analyze really stupendous amounts of data.  I was at the Seattle Museum of History and Industry recently, and in one of their displays they showed a 1980 IBM PC, and while showing it to my son, I pulled out my smartphone and told him that my phone today is just as powerful as that computer was.  Of course, I was wrong.  My phone is actually about 2.5 orders of magnitude more powerful than that PC.

Another thread is the rise of biobanking, in which biological material from patients is collected and held for future research purposes.  This allows comparison of historical medical records with any experiments and measurements made on those samples at a later date.

And, genome sequencing has become cheap enough that it’s not unthinkable that everyone will have their genome sequenced at birth, assuming we choose to do so.  The NIH has just announced grants for sequencing the genomes of newborns in order to see if that provides additional health and wellness benefits to existing neonatal care.

But using these kinds of data sources and computing tools comes with the cost of privacy.  It’s an open discussion topic at genomics meetings that anonymity is a concept with a very limited shelf-life with respect to experiments involving genome sequencing.

And so, Dr. Bobrow is asking the question of how do people use and plan to use genomic data.  The survey can be found here, and I urge anyone who is at all interested in the use of genomic data to check it out.  And even if you don’t think you would, or aren’t a “card-carrying” scientist, check it out anyway. Because the world keeps moving on, and I wouldn’t be surprised if, just a few years from now, genome data is something that a significant fraction of us are using, in novel and unexpected ways, just as we use so many other data sources, to enrich our lives.

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