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Don't expect to keep that DNA test info private

Nilesh Chandra, healthcare expert at PA Consulting, discusses data privacy concerns as genetic testing becomes more widespread.

Click here to read the full Crain’s article

As genetic testing gains popularity both at home and in the doctor's office, gaps in privacy protections are becoming more apparent.

Existing restrictions are full of loopholes. Federal law prevents genetic discrimination by health insurance companies and employers, but it doesn't prevent other insurers—including those selling life and disability policies—from making coverage decisions based on an applicant's DNA.

A bill headed for Illinois Governor J.B. Pritzker's desk would prevent at-home DNA testing companies from sharing information with any health or life insurance company. But there are a number of other ways people can lose control of their sensitive biological data. For example, a long-term care insurer can require consumers to turn over DNA test results before issuing a policy. Worrisome indicators could lead to higher premiums.

Nilesh says: "As time goes by, a lot of firms are going to get pretty sophisticated in their usage of data and the profiling of potential customers to identify higher-risk versus lower-risk cases."

Opportunities for privacy breaches will continue to increase as genetic testing becomes more widespread. Millions of people have used at-home DNA tests like 23andMe to learn more about their ancestry, traits and health. Genetic testing has long been commonplace in cancer care, but the bustling direct-to-consumer market has inspired hospitals to incorporate DNA tests into routine care.

Nilesh adds that given today's data analytics capabilities, reforms are needed to better protect the privacy of consumers and patients. That includes the leading privacy regulation in the U.S., the Health Insurance Portability & Accountability Act of 1996, or HIPAA.

Nilesh continues: Despite being surprised by the pace at which genetic testing has expanded into primary care, precision medicine and pharmacogenomics, or tailoring medications and doses to individual patients, is the future of health care.

It will be up to doctors and at-home DNA testing companies to educate patients, and up to patients to weigh the potential benefits with the inherent privacy concerns.

A global movement towards increased data privacy is changing the way companies do business. Are you ready for the new era of data privacy?

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