The message to employers is clear: don't send genetic testing data to insurers.
A Digital Journal report says that state-level disclosure laws play a big part in just how willing patients are to undergo DNA testing—and the variation across states also affects just how much of the test results can be accessed by insurance companies.
Massachusetts Institute of Technology researchers, it says, have done a countrywide analysis, finding that "differing types of privacy laws within U.S. states produce markedly different effects on the willingness of patients to have genetic testing done." In addition, patients are worried about whether insurers will be able to access the test results and whether, and how much, that could affect the cost of their insurance.
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Of concern, and the subject of the study, is the type of genetic testing that indicates whether, and how likely, a patient is to acquire disease or illness based on genetic makeup. Insurers can use that kind of data to predict how much support someone may need in later life or even to inform projections of an individual's life expectancy.
Patients are more willing to undergo genetic testing in states that protect the patients' privacy with regard to such tests, and that require informed consent before such data can be released. In contrast, states that don't address the issue of patient privacy with regard to genetic information are the sites of far fewer genetic tests.
Professor Catherine Tucker, lead investigator of the study, is quoted saying in the report, "The one thing we found that had a positive effect [on the number of tests] was an approach where you gave patients the potential to actually control their own data." Tucker adds in the report, "An approach which just emphasized consent, but with no parallel set of controls, actually damaged the ability of hospitals to be able to persuade patients to adopt these tests."
Study data came from the U.S. National Health Interview Surveys, which is part of the Centers for Disease Control and Prevention. The study, under the title "Privacy Protection, Personalized Medicine, and Genetic Testing," has been published in the journal Management Science.
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