The coming fight: genetic bias and individual privacy in the 21’st century

By Steve May, executive director, Fund for Genetic Equity

Scholars call this the information age. Truth is we all seem a little numb to titles like that. However, there is no disputing that in our lifetimes we all are bearing witness to the greatest expansion of human knowledge since the Renaissance. The amount of information available to each of us is stunning. A growing percentage of the information in the digital universe is privileged communications. Things like medical records, personal health information, and lab results. We all expect that this information is handled with care. We expect that the most intimate details of our health records are safe and secure.

Beyond this expectation, we think little about them. After all, they are numbers and statistics, family histories, dates of immunizations and x-rays. Suppose however, that someone or maybe many someone was very interested in the details of your personal health. Imagine that they had an interest in gathering as much information about your health as possible. Would that change how you would see the contents of your medical records?

Consider the circumstances surrounding a recently resolved civil rights case from Arizona between a group of Native Americans. (Arizona State Settles DNA Case With Indian Tribe – New York Times, 4/21/10) The Havasupai Indians reached an agreement with Arizona State University to participate in some genetic testing to resolve questions about a skyrocketing rate of diabetes among members of tribe in the 1990’s. Researchers at Arizona State used these same samples obtained as part of the diabetes research to investigate other scientific concerns: “including mental illness and theories of the tribe’s geographical origins that contradict their traditional stories”, without the expressed consent of the individual subject or the tribal nation.

In April 2010, Arizona State University’s Board and the Havasupai reached a settlement giving the tribe greater control over what kinds of tests the university may perform, the University also paid $700,000 to members of the tribe as compensation.

Tribal members in good faith believed that medical staff would focus their research narrowly. Instead, university researchers took liberties and pursued their own agendas. This is our new reality. Increasingly, more and more third parties have access to our genetic and personal health information. And increasingly these third parties have their own agendas, own business plans and corporate interests. We live in an age where, knowing what type of genotype you have may affect how your physician prescribes for you.

We all thought we were safe. We thought our medical records were secure. But, we were wrong. HIPPA (the Health Information Privacy and Portability Act) the primary law responsible for governing health privacy passed some fifteen 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. Under current conditions, little stops labs from selling the results of your DNA test to researchers without your expressed consent.

Information in and of itself is neither all good or all bad. A growing list of challenges stands to threaten our control over our genetic information. This rising flood of genetic information begs the question, “…who is responsible for policing its use.”

Laws governing genetic information have been completely outstripped by the 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. But, leaving that very same lab to profit from licensing your genetic profile while you know nothing of their deal in a violation of one’s basic human rights. Individuals need to be able to exercise authority over their genetic information.

We live in an age where companies profile doctor’s prescribing patterns, and by reversing details of your medical profile can identify which patients get what products. And yes, we live in an age where, These obstacles taken in their totality demand an advocacy approach equal in scope to the challenges posed. A coordinated, common sense legal approach is needed to safeguard the individual well-being of all. With the rapidly changing public health and public policy and political environments, delay is unthinkable.

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