This week’s barrage of news coverage of the leaked surveillance programs run by the National Security Agency got me thinking about another story we ran about a group of scientists who have created an alliance for genetic research.
Obvious connection, right?
The Broad Institute is a coalition made up of more than 70 healthcare, research and disease advocacy organizations located in more than 40 countries. The group intends to organize and connect the “growing trove of data on genetic variations” and other health data into databases—after getting user consent, of course—for aiding researchers and other health professionals.
“Millions more people are expected to get their genes decoded in coming years, and the fear is that this avalanche of genetic and clinical data about people and how they respond to treatments will be hopelessly fragmented and impede the advance of medical science. This ambitious effort hopes to standardize the data and make them widely available.”
The researchers think gathering and sharing all this genetic data will help improve cancer research and find cures for rare diseases. But to do this, they need TONS of data to help understand various patterns and why certain individuals get certain diseases.
But of course, researchers such as Prof. Latanya Sweeney, Paul Ohm and others warn us about re-identification of supposedly anonymized data. I know others, such as Daniel Barth-Jones, disagree. Regardless, there is concern that de-identified data can find its way back to an individual.
Personal privacy is a concern. I can tell you from personal experience, having your personal health data get used for research without your consent is, at the very least, an unsettling and alienating experience. We need to have some control over our personal health data.
But, think of all the public good that can come out of what the Broad Institute aims for.
With that said, I’m sure many involved in the NSA’s anti-terrorism programs would argue their work is also for the public good. For me, being in the Boston area, there are still fresh memories of the terrorist attacks at the Boston Marathon.
And today, President Obama said a right balance between security and privacy had been struck. “You can’t have 100 percent security and then also have 100 percent privacy and zero inconveniences,” he said, adding, “You know, we’re going to have to make some choices as a society.”
That last part is key. Whether we’re talking about genetic research and personal privacy or protecting a populace from terrorism and personal privacy, we should have some say in those “choices.” The Broad Institute is aiming to get consent from its data subjects, and that’s laudable. But as a free society, how are we as citizens going to get to play a role in making those choices of balancing our privacy with our security?
Update: Since posting this last Friday, Edward Snowden has decided to identify his role in leaking these NSA programs. He said he made such a choice because he doesn’t “want to live in a society that does these sorts of things.” Whether you think he’s a hero or villain, his choice will be debated for quite some time. Will his decision positively or negatively affect our society?
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