related to the Hela genome controversy
http://www.technologyreview.com/view/512966/the-dawn-of-genome-trolling/#comments
Putting genome data into the public domain advances science, but nearly all of it can be linked to someone.
Last week European scientists were shamed into cutting off public access to a genome sequence. As far as I know, it’s the first instance of a genome pulled from the public record….
Some quotes that I thought interesting:
“That is private family information,” said Jeri Lacks-Whye, Lacks’s granddaughter. “It shouldn’t have been published without our consent.” Some scientists agree: Jonathan Eisen, a genomics researcher at the University of California, Davis, tweeted, “A bit stunned that the people publishing the HeLa genome appear to not have gotten consent from the family.” Another said this was going to further damage public trust in science. A few argued that the cells had changed so much over time, they couldn’t accurately tell us anything about Lacks (to which a geneticist replied, “Your claim is so wrong that I don’t know where to start”).
…
After hearing from the Lacks family, the European team apologized, revised the news release and quietly took the data off-line. (At least 15 people had already downloaded it.) They also pointed to other databases that had published portions of Henrietta Lacks’s genetic data (also without consent). They hope to talk with the Lacks family to determine how to handle the HeLa genome while working toward creating international standards for handling these issues.
http://www.nytimes.com/2013/03/24/opinion/sunday/the-immortal-life-of-henrietta-lacks-the-sequel.html?pagewanted=all&pagewanted=print http://www.g3journal.org/content/early/2013/03/11/g3.113.005777.abstract
Some quotes that I thought interesting:
“That is private family information,” said Jeri Lacks-Whye, Lacks’s granddaughter. “It shouldn’t have been published without our consent.” Some scientists agree: Jonathan Eisen, a genomics researcher at the University of California, Davis, tweeted, “A bit stunned that the people publishing the HeLa genome appear to not have gotten consent from the family.” Another said this was going to further damage public trust in science. A few argued that the cells had changed so much over time, they couldn’t accurately tell us anything about Lacks (to which a geneticist replied, “Your claim is so wrong that I don’t know where to start”).
…
After hearing from the Lacks family, the European team apologized, revised the news release and quietly took the data off-line. (At least 15 people had already downloaded it.) They also pointed to other databases that had published portions of Henrietta Lacks’s genetic data (also without consent). They hope to talk with the Lacks family to determine how to handle the HeLa genome while working toward creating international standards for handling these issues.
http://www.sciencedirect.com/science/article/pii/S1074552113000094
Volume 20, Issue 1, 24 January 2013, Pages 1–2
As Personal Genomes Join Big Data Will Privacy and Access Shrink? Jeanne Erdmann
Chemistry & Biology
QT:{
We live immersed in a world of big data. Every Internet click is tracked and noted—where we browse, what we view, how long we browse, where we shop, what we buy, what we “like.” In fact, many of our daily activities are monitored. Surveillance cameras track vehicles as they pass through intersections and track pedestrians as they walk down sidewalks; cameras note our transactions at ATMs. While it’s understandable to worry that so much surveillance invades our privacy, we may be overlooking the most personal information of all: the order of base pairs in our genomes. Each day, DNA sequencers worldwide churn out personal genomic data, which are then folded into large databases, some of which are open access, others of which are privately held. All of these big data collections carry value, and they’re mined for that value, whether it’s to tell Amazon what kind of books we like or to tell researchers whether our DNA carries variations that link to an increased risk for disease.
“I do think that those are parallel discussions,” says Mark Gerstein, PhD, a professor of bioinformatics at Yale University in New Haven. “But if you talk to most genomicists they don’t usually connect genomics with large-scale data mining on the web or in life.” They’re the same, Gerstein says. People may be attuned to the concept of secrets and privacy of personal information but not when it comes to mining terabytes of personal genomic information. The distinction is critical, because our tastes in books and music may evolve over the years, but our genomes never change.
}