Heads up, Mr. Watson!
Scientists argue that we need whole genome sequencing. But do we really need to know who supplied his DNA for that job? If you say "yes" - then who should be the first person to have their individual genome sequence published? There's no better choice than James Watson, co-discoverer of the DNA structure. Karin Hollricher
(Apr 16th 2007) Two years ago James Watson supplied 454 Life Sciences with a blood sample. The company, which is one of several firms that want to make large-scale human sequencing routine, announced that it will soon hand over a DVD to Watson with his personal genome data. Others are about to follow Watson. Craig Venter will also allow his genome to be published soon. Computational geneticist George Church from Harvard Medical School has set up the "Personal Genome Project" (PGP). The PGP consortium will sequence and publish whole genomes of volunteers and of Church himself.
Technically speaking, personalised genomics is an issue of quick and cheap sequencing. "I am optimistic that while society is not now ready, it will be this year", wrote Church in The Edge. 454 Life Sciences and other firms are doing their best to develop techniques which will make human DNA re-sequencing routine. They all have their sights set on the 1000-dollar genome - and on the X-Prize. The X-Prize Foundation has promised a US$10 million reward for sequencing 100 human genomes in ten days. There's no doubt that somebody will collect the money, it's only a question of time.
Again, and more urgently, the question arises about handling personal genome data. Is publishing personal DNA sequences really a good idea? The genome is full of sensitive data - but who defines sensitivity? Watson told Science that it was simply curiosity that caused him to give his blood to 454 Life Sciences. However, 454 Life Sciences has now said that perhaps all genetic loci currently known to be associated with disease risks will be blocked. For Watson most of his personal, potentially sensitive genomic data need not give cause for alarm. The scientist is already 79 years old and at low risk of developing genetically-based diseases. Only Alzheimer's disease might eventually trouble him. That's why he wanted to have his personal ApoE-alleles blanked out. However, Watson's genomic data may very well have a substantial impact on his sons and their offspring. At the end of the day, Watson, together with his family, will decide what's going to be published. That may not be an easy task. Who can foresee today what genome data will be considered sensitive in ten years, given the fact that new correlations between diseases and genes are identified on an almost daily basis?
What is really alarming is realising that data privacy cannot be guaranteed by any means. Although Church is a passionate advocate for the usefulness of personalized genomics, he presents nine scenarios on the PGP website showing how anonymity can be compromised. So it's clear that confidentiality and anonymity promised by researchers or companies cannot be upheld. Individuals contributing to medical research are advised to do so with their eyes wide open. Heads up, Mr. Watson!
