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Monday, March 25 , 2019, 1:12 am | Fair 50º

 
 
 
 

Neil Rocklin: Cal’s Swab Story Raises All Kinds of Privacy Questions

It may be good for the gene pool, but is this experiment really in the students' best interest?

Incoming UC Berkeley students, with genetics professor Jasper Rine as their guide, will embark on a journey of personalized medicine this fall. Under the program, all students who wish can submit a DNA sample from their cheeks so three genes that help regulate the ability to metabolize alcohol, lactose and folates can be identified.

Neil Rocklin
Neil Rocklin

Those genes were chosen not because they indicate serious health risks but because students with certain genetic markers may be able to lead healthier lives by drinking less, avoiding dairy products or eating more leafy green vegetables, according to an article last month in The New York Times.

My sister was also curious when her oldest daughter was given the opportunity to discover if she had the genetic marker for Crohn’s disease, a disorder her youngest sister was being treated for. It sounded like a good idea because they also wanted to be proactive and prevent the occurrence of the disease, for which there is no known medical cure.

HIPPA laws would certainly guarantee privacy. But what they didn’t know is what I learned when I underwent surgery and balked at Blue Cross’ request for my entire medical record to determine the medical necessity of my hospital stay being extended by my cardiologist, who wanted to monitor my condition an extra two days after I passed out on my hospital room’s floor. Blue Cross bluntly informed me that as a subscriber I had consented to its access to my entire medical record, even that part of my health care that was unrelated to my surgery, and refusing to release the record would discharge the company from paying for my hospitalization.

My niece subsequently discovered that despite not being symptomatic, she had the marker, and that health insurance carriers had no interest in contracting for her medical care following her graduation from San Diego State University.

Of course, college freshmen are protected because this research passed Berkeley’s Human Subjects Institutional Review Board and the university is protected because participants must sign an informed letter of consent.

Now, let me get this straight. Incoming students who are newly emancipated young adults leaving home to explore the world at a world-class university and who scratched and clawed their way through SATs and AP classes will not feel pressured to participate and be able to accurately weigh the hazards of being part of the “Grand Experiment” and take risks most of us old (wiser?) graduates would decline? There is even some small monetary prize for winning that will sweeten the intellectual gains of needy students’ participating.

I find it curious that the same opportunity could have been made available to faculty and administrators but wasn’t, so they won’t learn about the benefits of restrained imbibing, why to avoid dairy products and the benefits of leafy green vegetables.

So, to all of you new, bright and inquisitive students in Cal’s College of Letters & Sciences, a few words of advice from my long dead, but much loved, father: “Caveat emptor” and “There is no free lunch.”

— Licensed clinical psychologist Neil Rocklin is a psychology lecturer at CSU Channel Islands. For the past 30 years, he has treated children, teens and adults with a host of psychological disorders, and currently teaches college students about personality development, abnormal behavior and criminal behavior.

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