Consumer Genetic Testing & Data Privacy: What Are Genetic Testing Companies Doing With Our Data

At-home genetic testing has expanded rapidly in the past decade and will continue to do so. Genealogy and at-home genotyping test are gaining popularity; many citizens are voluntarily submitting samples of their DNA to find out more about family origins, identify possible health risks, and find distant relatives. When signing up for genetic testing, there is accompanying paperwork, consents, and waivers that must be filled out. The databases of genealogical and DNA information from companies such as 23andMe, GEDmatch, and Ancestry DNA are expanding, but there are now concerns as to the access their databases give to outside parties.

Who Has Access to This Vital Information?

As the consumer of genetic testing, you have access to your genetic information from the company. With the recent advancements in genetic testing, you could find out who your third cousin is if they have also been tested. On certain platforms, such as 23andMe, you can chat online with others who have similar genetic markers as you because you may have a relation to that person. Genetic testing is allowing for long-lost relatives and unknown family members to connect. Genetic testing also allows for information regarding possible health benefits or possible health concerns, like predispositions to adverse reactions to medications. The insight of personal health that is offered through at-home genotyping is for informative and preventative measures regarding overall health.

The ease of access to genetic testing for the average consumer has increased gaining in-depth knowledge of wellbeing and health in a quick, at-home, effortless manner. Numerous large genetic companies like Genentech - , are in contracts with genotyping companies to use the genetic data collected to test for diseases such as Parkinson’s. Consumer DNA is often protected by the Genetic Nondiscrimination Act of 2008, which means that your data is protected from insurance carriers, and current or future employers. Some testing companies require any law enforcement offices, or agency to have a valid subpoena to access their records, whereas others don’t and willingly share consumer databases with third-parties.

How Are You Protected?

When doing an at-home genotyping test, the person participating is protected by many various layers of security from how the database is protected online to outside entities. The testing companies often separate identity from the DNA. Separating identity from a DNA sample is an arduous process because DNA is as unique as a fingerprint. Separating two distinct identifiers is the beginning of how the National Human Genome Research Institute’s (NIH) privacy policy protects individuals. The NIH protects anonymity in research, clinical settings, and in society. Unless there is a specific court-approved reason, depending on the company of choice, the consumer is protected from unwarranted access to your genetic results. This protection is inclusive of your genealogy, or family members, are also protected.

Although there have been numerous attempts at legislation being passed to allow government agencies and law enforcement carte blanche access to genetic databases, none of the new legislatures has been passed. Many agencies do not want access to this information as it may violate the fourth amendment of the Constitution.

Should You Participate in Genetic Testing?

Genetic testing can be used to the advantage of the consumer, not only to gain insight into the genealogical background but to gain pertinent health information. There are genetic privacy laws, and policies, that protect individuals identity and information. Some companies operate with looser guidelines of information sharing. As with any new technology, there will be changes to better how data is stored, shared and managed. Doctors and officials are diligently working on evolving the methods in which genetic information is currently stored and used. Genetic testing is up to the consumer; research should take place before taking on any endeavor that involves the health of a person. Ultimately the information a consumer gets from partaking in testing can help gear them towards making better and informed decisions for their wellbeing.