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Genetic Testing: How Much Access Do Companies Have to Our Personal Information?

By Jillian Chong

According to Margo Georgiadi, the president and Chief Executive Officer of Ancestry, around 30 million people in the world have taken a DNA test as of February 2020. Genetic tests are mostly produced and distributed by companies one may have heard of: 23andMe, Ancestry, CircleDNA, GenoPalate, MyHeritage, and more. These genetic testing companies complete direct-to-consumer (DTC) genetic testing, which describes the easy-to-access tests that provide consumers with their genetic information without needing their healthcare provider. These testing kits, bought online and in stores, simply need consumers to provide a DNA sample, usually in the form of saliva, for them to obtain information like predisposed health conditions and genetic relatives.

With the sheer amount of information consumers unlock by submitting a small sample of their saliva, the idea of DTC genetic testing seems too good to be true. Because these companies are using consumer DNA to compile as much personal health information as possible, it is important to keep in mind how much information these companies possess. Is the value of genetic testing worth the potential consequences of private companies using consumer personal information to their advantage?

Currently, two federal laws exist to protect sensitive patient health information: the Health Insurance Portability and Accountability Act of 1996 (HIPAA) and the Genetic Information Nondiscrimination Act (GINA). HIPAA requires national standards that prevent patient health information from being divulged without patient consent. Meanwhile, GINA requires that individuals are not discriminated against based on their genetic information when it comes to health care and employment. It must be made clear, however, that only one of these laws safeguards consumer information from DTC testing companies. The HIPAA privacy law only applies to “covered entities” like healthcare providers, not genetic testing companies like 23andMe. This means that DTC testing companies are allowed to (and do!) share collected information with third parties.

A study conducted by the Consumer Reports’ Digital Lab on the five aforementioned DTC genetic testing companies found that all five companies provided third parties with access to the collected genetic information. All five companies collected more personal information than necessary and other non-DNA data, like name and address, which third parties also have full access to. Third-party companies that use consumer data from testing companies include Google, Microsoft, Facebook, Yahoo, and Pinterest. These companies are usually able to use the information they acquire for any purpose they desire. How these private companies may use the data to their advantage is a thought worth considering when deciding whether or not to take a test.

Data collection, storage, and third-party sharing can affect a consumer’s life by limiting their opportunities in insurance, interest rates, or employment. Companies can create profiles on every individual that contain information about health, among other personal details. There is always the potential that companies will sell the profiles to other companies that have larger power over necessities, like life insurance. If, for instance, an individual is predisposed to a life-threatening health condition, life insurance companies that are aware of this condition will attempt to reject the patient’s request. Despite the enactment of GINA, the public access of many companies to crucial private and personal information can greatly affect one’s future opportunities.

If the value of genetic testing does not seem worth the loss of privacy, then the best course of action would be to avoid taking a DTC genetic test altogether. If genetic testing is required, there are a few ideas one should know about before sending a sample. First, companies are allowed to change their privacy policies even after a consumer has agreed to them. They should inform consumers after a policy change, but they are free to make the policies more relaxed if necessary. Additionally, most genetic testing companies provide individuals with the ability to opt-out of sharing genetic information for research purposes. Although much of the information sent for research is de-identified, most of the time, the data can be traced back to the consumer from whom the data was retrieved. Opting out of research usually just requires the tick of a checkbox.

Overall, before jumping into genetic testing, consumers need to make themselves aware of the privacy policies surrounding genetic testing and the consequences of providing such personal information to the hands of privately-owned companies. While genetic testing can provide necessary advancement to the world of science in the long term, it can also detrimentally affect users in the short term.

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