Today, an international set of institutions is announcing the launching of a “Global Alliance” for advancing research in genomic medicine. Over seventy institutions – from the National Institutes of Health to the Wellcome Trust to Genome Canada; from universities such as Stanford, Oxford, UC San Francisco, Toronto, Chicago, Cal Tech, McGill, and Michigan; to centers like the Broad Institute, MD Anderson, and BGI-Shenzen – have joined as founding members. I was fortunate enough to participate in one of the early meetings on this effort, held in January 2013 in New York City, and have been following its progress closely ever since. I think it has the potential to be important – both for science and for research ethics.
The basic idea is that, thanks to advances in DNA sequencing technologies, the amount of human genomic data is exploding. Three years ago, probably 10 people had been fully sequenced. One year ago, perhaps 1,000 had. Today, my best guess is somewhere between 10,000 and 100,000. Each of those sequences involves billions of A’s, C’s, G’s, and T’s – and, to be most useful, each must be connected with information about the phenotypes of the people sequenced . . . their physical characteristics, most notably related to health.
The problem is how to make the best use of all that data. How can as many researchers as possible make good use of vast amounts of data that is generated all over the world? The Global Alliance proposes standards for the collection, storage, and inter-operability of databases to make it easier for the information to be shared. In this, it is modeling itself both on the World Wide Web Consortium and on the Human Genome Project.
But the scientific value of the broad sharing of data needs to be balanced against the interests and right of the human beings who data is being shared. That data is, after all, the genome sequences and health histories of actual men, women, and children. What I personally found refreshing – and exciting – about the Global Alliance discussions was the recognition of the critical importance of respecting those people and their rights.
So what does Global Alliance really mean today? That a start is being made and an effort undertaken. There are lots of really hard questions, both technical questions of genomics, health, and computer software, and ethical and legal questions of participants’ rights. It is only a start – the more than 70 institutions that have signed the Global Alliance’s letter of intent have committed themselves, thus far, only to see what can be done. It is possible that, in this less than perfect world, very little can be done and that the Global Alliance will fizzle out. But it is also possible that it will speed biomedical innovation and thus relieve human suffering, while respecting the rights of those who have contributed their blood (often literally) and tears (over their health conditions) to the work.
I sincerely salute David Altshuler from the Broad Institute who, as far as I can tell, was the leading force (with lots of help) in getting this moving and I will watch with interest – and will try to contribute to – how it develops.