Results tagged “Privacy”

November 23, 2011

MichaelWaterstone.jpgBy Professor Michael Waterstone

Would you be comfortable taking a genetic test to see if you had a genetic predisposition to certain diseases? Even if your doctors tell you it might be medically useful, would you be concerned that the results might somehow come back to harm you? Perhaps your employer might find out the results, and, depending on the results, worry about your future productivity? Or would you be concerned that your insurance company could find out and use this information to raise your health insurance rates?

Ninety percent of Americans feel that taking genetic tests leaves them open to this type of genetic discrimination. In response to these fears, and based on the observations of doctors that patients were not getting genetic information for medical purposes and not participating in research studies, Congress passed the Genetic Information Discrimination Act ("GINA"), which prohibits discrimination on the grounds of a person's genetic information in employment and in the provision of health insurance. Although GINA has been on the books since 2008, a recent survey found only 16 percent of people surveyed knew its protections existed. As in all areas, law takes time to work its way into culture.

I recently attended a conference in Ireland on the need for a European framework to deal with the problems of genetic discrimination in Ireland, cosponsored by the Centre for Disability Law and Policy, National University of Ireland, Galway and the Burton Blatt Institute at Syracuse University. The audience was academics, policymakers and government officials. The chair was Justice John McMenamin of the Irish High Court, and Marian Harkin, a member of the European Parliament, was in attendance. The conference got a nice write up in the Irish Times.

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June 27, 2011

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By Associate Professor Aaron Caplan

On June 23, 2011, the U.S. Supreme Court issued its 6-3 decision in Sorrell v. IMS Health, Inc. I previously wrote about the case here. In the new decision, the Court invalidated a Vermont law that prohibited the sale and use for marketing purposes of pharmacy records that reveal doctors' drug prescribing practices without the doctors' permission. The Court viewed Vermont's law as a ham-handed attack on a particular type of commercial speech, so its ordinarily laudable free speech impulses kicked in. However, it failed to recognize the legitimacy of protecting informational privacy as a governmental goal, and indeed doubted that the law would even advance doctors' privacy. This surely comes as a surprise to doctors, who now find that data brokers have a constitutional right, at least in some settings, to buy and sell their information for commercial gain without their knowledge or consent.

The Court's decision contains mostly bad news for those who value individual control over the commodification of personal information. However, it leaves open the possibility that the real flaw in Vermont's law was not that it attempted to protect too much privacy, but that it protected too little.

THE BAD NEWS.

1. The Court revealed little understanding of why violations of informational privacy are troublesome. Evidence at trial showed that many doctors felt violated when they learned that pharmacies were selling information about the doctors' prescriptions to drug manufacturers behind their backs, alarmed that the manufacturers were secretly using the information to manipulate them during visits by pharmaceutical representatives, and outraged that the records could be used as a back-door method of determining their confidential and privileged advice to their patients. The biggest harm to privacy was not, as the Court seemed to think, that a pushy sales representative might come to a doctor's office. The harm was that doctors reasonably felt that their lives and livelihoods were under surveillance for the benefit of others. Overall, the Court showed little enthusiasm for informational privacy as a desirable component of a good society, and no recognition at all that it is a value of constitutional stature.

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