Protection of Data is Essential

by jeeg 26. June 2010 00:05

Scholars call this the information age. The truth is we all get a little numb to supercharged claims like that. However, there is no disputing that in our lifetimes we are bearing witness to a great expansion of human scientific knowledge, especially as the costs of acquiring that knowledge rapidly decrease.

A few short years ago, the costs of processing genetic material to secure important medical information was prohibitive. Today, companies are advertising genetic testing as part of routine medical exams for less than $200. Costs are so low, that "recreational" analysis of genetic material for uses as varied as preparation of pieces of art for the walls of your home to the provision of genetic genealogies, are proliferating.

Exactly what is happening to this genetic material and the information it provides? How is individual privacy and control of information protected? Who is minding the store when even medical institutions that presumably have been dealing with protecting personal privacy, have difficulty sorting through issues of transparency and individual self-determination?

Consider the circumstances surrounding a recently resolved civil rights case from Arizona ("Arizona State settles DNA case with Indian tribe," New York Times, April 21), where the Havasupai Indians reached an agreement with Arizona State University to protect the privacy and control of genetic material the tribe had initially provided to researchers to investigate questions about the skyrocketing rate of diabetes within the tribe.

The Havasupai sued when they discovered that researchers provided these same samples for other research uses without the express consent of the individual subject or the tribal nation. The settlement gave the tribe greater control over what kinds of tests the university may perform and the university paid $700,000 to members of the tribe as compensation.

Tribal members in good faith believed that university research staff would limit their focus. Instead, in the absence of appropriate oversight and regulation, university researchers took liberties with this highly personal information and pursued their own agendas. This is our new reality. Increasingly, more and more unwanted third parties have access to our genetic material and the personal information it contains. Increasingly, these third parties have their own personal agendas, profiteering business plans or selfish corporate interests.

Many Americans think we are safe. We think our information is secure. We are wrong.

HIPPA (the Health Information Privacy and Portability Act), the primary law responsible for governing health privacy, was enacted some 15 years ago. Since that time, we have seen the complete mapping of the genome. With this advance we have seen genes being patented and turned into commodities. Artwork or family histories based on the results of genetic testing can be had for a couple hundred dollars. Currently, there is little to prevent these labs from selling your DNA information to researchers or others without your expressed consent.

Laws governing genetic information have been completely outstripped by the rapid pace of scientific advances. It is critical that those who would use genetic information to create life-saving treatments and therapies have access to the material they need. However, leaving that same lab to profit from licensing your genetic profile without your knowledge and consent is wrong. Individuals need to be able to exercise authority over their personal genetic information.

A coordinated, common-sense legal approach is needed to safeguard the privacy and well-being of all while maintaining a pathway to research into cures that we all support. With rapidly changing public health policy, along with scientific and commercial environments, delay is unthinkable.

By Steve May

 



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