Continuing the theme of yesterday’s post about data sharing, Nature Biotechnology is running an Editorial this month (Nature Biotech. 27, 777; 2009), ‘DNA confidential’, pointing out that as “the cost of human genome sequencing plunges and large-scale genome-phenotype studies become possible, society should do more to reward those individuals who choose to disclose their data, despite the risks”. The Editorial continues:
“The genome sequence of Patient Zero is disclosed on ”http://www.nature.com/nbt/journal/v27/n9/full/nbt.1561.html">p. 847 of this issue. The paper is notable not only because it provides the first description of the performance of a single-molecule platform in sequencing a human genome (90% of it, at least), but also because Stanford professor Stephen Quake (aka Patient Zero) opted to tell the world that it was his DNA that had been sequenced. Like scientific pioneers before him, Quake is heroically self-experimenting—testing the risks in publishing identifiable personal information of the most intimate kind."
The Editorial goes on to weigh up some of the risks and benefits to an individual and to society at large if people’s genome sequences are generally available, covering healthcare, privacy issues and costs, concluding that “There will be some individuals, like Steve Quake, who will provide samples and data without an incentive; but when it comes to exploring the basis of being human and moving toward the goal of genomic medicine, society needs to do more to provide personal incentives to those who choose to disclose their data, despite the risks. After all, everybody will ultimately benefit—both those who share and those who choose not to.”
Single-molecule sequencing of an individual human genome
Dmitry Pushkarev, Norma F Neff & Stephen R Quake