Friday, February 27, 2015

Sharing Your Personal DNA Data Can Help Others

Personal Genomics

A Human Genome: This is the digital representation of the human genome, which a museum visitor in New York City is viewing in 2001. We have come a long way since June 2000, when the Human Genome Project successfully presented a working draft of the human genome. The cost of having your genome sequenced has dropped considerably since then. Personal genomics will lead to personalized medicine and made-to-measure drugs to treat a host of diseases, including cancer.
Photo Credit: Mario Tama, Getty Images

An article (“The Internet of DNA”), by Antonio Regalado, in MIT Technology Review looks at the issue of personal genomics—the sequencing of an individual’s DNA— and the benefits of sharing it to a large network like the Internet in the hopes of helping others with similar diseases. This of course raises issues of privacy and possible breaches of security, but it also raises issues of human cooperation and the multiplying power of sharing information and knowledge.

In many ways, it is defines the modern battle between personal privacy and public pursuit of knowledge. What has to be decided is whether society at large is ready to sacrifice individual privacy to increase knowledge and better humanity. Your medical treatment, notably if successful, could benefit millions of others around the world. This is the crux of the argument.

Regalado writes:
 In January, programmers in Toronto began testing a system for trading genetic information with other hospitals. These facilities, in locations including Miami, Baltimore, and Cambridge, U.K., also treat children with so-called ­Mendelian disorders, which are caused by a rare mutation in a single gene. The system, called MatchMaker Exchange, represents something new: a way to automate the comparison of DNA from sick people around the world.

One of the people behind this project is David Haussler, a bioinformatics expert based at the University of California, Santa Cruz. The problem Haussler is grappling with now is that genome sequencing is largely detached from our greatest tool for sharing information: the Internet. That’s unfortunate because more than 200,000 people have already had their genomes sequenced, a number certain to rise into the millions in years ahead. The next era of medicine depends on large-scale comparisons of these genomes, a task for which he thinks scientists are poorly prepared. “I can use my credit card anywhere in the world, but biomedical data just isn’t on the Internet,” he says. “It’s all incomplete and locked down.” Genomes often get moved around in hard drives and delivered by FedEx trucks.

Haussler is a founder and one of the technical leaders of the Global Alliance for Genomics and Health, a nonprofit organization formed in 2013 that compares itself to the W3C, the standards organization devoted to making sure the Web functions correctly. Also known by its unwieldy acronym, GA4GH, it’s gained a large membership, including major technology companies like Google. Its products so far include protocols, application programming interfaces (APIs), and improved file formats for moving DNA around the Web. But the real problems it is solving are mostly not technical. Instead, they are sociological: scientists are reluctant to share genetic data, and because of privacy rules, it’s considered legally risky to put people’s genomes on the Internet.
I for one would be willing to share my biomedical data, and have said so in my cancer blog. This puts me in good company; Steven Pinker had his genome sequenced years ago and allowed the information to be posted on the Internet, he wrote in an article for The New York Times (“My Genome, My Self ”; January 7, 2009).

I have not had my genome sequenced, but if it could be done for free, I would willingly publicly share my biomedical information, not only for the sake of science, but more important for the sake of others. One of the signs of a highly developed and morally healthy society is a willingness to help others, altruism at its finest, and a willingness to better the human condition.

The perceived loss of privacy is really of no or little consequence when compared to the benefit of helping many other persons. Even so, there are obstacles of the mind. Privacy advocates have been beating the drums of privacy for decades, and have been successful in creating a climate of fear on such matters. [The question to ask is: Why is personal privacy so important?] For this reason, this transition to open sharing will not be an easy one, chiefly because people have been told not to share, and, moreover, have become reticent, reluctant and spooked about sharing any personal information.

For the sharing of biomedical data to become feasible, it will require that governments ensure that such information cannot be used by, say, insurance companies to deny coverage to individuals deemed  statistically “at risk” of a disease or condition they currently do not have; it will also require that societies rethink personal privacy and why it’s important, and most of all it will require a shift away from the idea that protecting individual privacy is more important than sharing personal information with the purpose of bettering humanity.

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For more, go to [MITTechReview]

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