DNA: the infinite potential of databases

A section of the Massachusetts Institute of Technology (MIT), dated Wednesday, October 21, 2009, discusses the launch of a new collection of genetic data in California. A plan to better understand the genetic and environmental causes of disease. The article seems to corroborate some of the fears of American lawyer Daniel Solove, whose words were echoed by the French magazine InternetActu.net the same day, evoking the dangers arising from crossing data on the long term.

100,000 Californians over age 65 should participate in this program, undertaken by the University of California (San Francisco) and the National Intsitutes of Health and funded to the tune of 25 million dollars from the federal government. Some participants are clients of health insurance as Kaiser Permanente (Oakland). The MIT article cites other similar projects including the UK Biobank, which currently collects 500,000 genomes or the Mayo Clinic who collected 20,000.

These data, searchable by other scientists, can be crossed with information such as places to live, work, quality of air and water and ... lifestyle of patients. This attempt to establish what roles do genes and environment in causing disease.

Imagine then drifts that could lead to manipulation of such databases. The risk, as noted by the article InternetActu, comes not so much the collection of data that use it is made. "Often, the answer to concerns about the privacy of our data is that 'those who do not violate the law did nothing wrong,'" says the magazine that speaks the words of Daniel Solove, a law professor at School of Law George Washington University and author. We would thus nothing to fear from the massive collection of data. Yet, according to Daniel Solove, this argument would weigh two entities: the strong and the weak, the citizen and the executive, the beginning and the consumer, the patient and her health insurance. The article is based not on George Orwell's 1984, but Kafka's The Trial. "The problem lies not in the same monitoring data, but the powerlessness and vulnerability created by using data that excludes the person of knowledge or participation in the processes that concern," wrote Daniel Solove.

What do our data, especially if they are reused for a different purpose than that for which they were collected? "How can we be sure of having done nothing wrong? And if the rules changed? "Asks Hubert Guillaud of InternetActu.