Massachusetts Institute of Technology researchers have undertaken a U.S. wide analysis and found 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 turn, a concern with patients is whether insurance companies are allowed to access the digital data and the extent to which this will affect insurance costs.
The type of genetic testing that the research covers is that which gives an indication of an individual’s generalized risk of acquiring diseases and illnesses. Insurance companies can use such data to predict how much support someone may need in later life and even to gather an indication of an individual’s life expectancy.
The findings are understandable: state policies that focus on protecting the privacy of individuals in relation to genetic testing, and which require patient consent before data is disclosed, lead to a higher probability that a patient will submit to genetic testing. In contrast, state policies that do not place limits on the further disclosure of genetic data without consent, and which do not explicitly define genetic data as the property of the patient, see far fewer tests performed.
Commenting on this, lead investigator Professor Catherine Tucker said: “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.”
The researcher adds, that in contrast: “An approach which just emphasized consent, but with no parallel set of controls, actually the damaged the ability of hospitals to be able to persuade patients to adopt these tests.”
Data for the study was taken from the U.S. National Health Interview Surveys, which is part of the Centers for Disease Control and Prevention (CDC). The analysis has been published in the journal Management Science under the title “Privacy Protection, Personalized Medicine, and Genetic Testing.”
