Where is my information going?

By S.Fabian
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Figure 1. Direct to consumer testing kit
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23 and me results
Figure 2: My direct testing results
How many times have you wondered about your ancestry or were curious about potential diseases your genetic history might encompass? I know for a fact that I was curious to see  my ancestry, so I embarked on a quest to try direct-to-consumer testing for my ancestry. My results were pretty much what I had predicted. I was about 87.7% Indigenous American and 9.3% European. These were nice results to receive as I was also able to connect with a long-lost cousin in the family line. However, in light of feeding my curiosity I didn’t think much of the policies that were put into place to protect my information. So what are they? Do we even know what they are? As we do so much to make sure our SSN or credit card information is protected, shouldn’t we do the same for our genetic information? Like that is literally us while the other things are superficial stuff that can be canceled or reported, it can be changed, but we can’t do that with our genetic information. So, what do they do with the genetic information you provided for these genetic tests?  

What is genetic direct-to-consumer testing?

Let’s start off first by understanding what direct to consumer also known as DTC is. It is essentially an analysis of genetic material that was submitted by the consumer (Hazel 2018). It ranges from a variation of saliva, buccal swab, and nasal swab. Anything that they can essentially use to extract a DNA sample. Many companies offer a wide variety of test that consumers can choose from. They provide services ranging from health and ancestry to identification of surreptitiously-gathered biological material sent in by a suspicious spouse (Hazel 2018). They try to cater to ones need in things that they are curious in finding out. Just to name a few that you might be familiar with are 23andMe, ancestry.com, and familyTreeDNA. They all work with these types of test. There is of course others but these are the more popular genetic companies one tends to hear about.


Policies listed

The laws posted for other clinical practices such as Health Insurance Portability and Accountability Act of 1996. Which HIPPA aims to protect sensitive patient health information from being disclosed without the patient’s consent or knowledge (CDC 2022). It also gives patients the right to understand and control how their health information is used (CDC 2022). This privacy rule is not attached to these tests as they are considered “health-related data collected by technology”. Which does not fall underneath the standard of HIPPA. Also note that HIPPA was created in 1996 so back then the idea of technology reaching this far was way beyond our understanding at that time. However,  Genetic information nondiscrimination Act of 2008 (GINA) and Americans with Disabilities Act (ADA) , does protect us from the discriminatory use of genetic information by employers and health insurance companies (Hazel 2018). So that’s a good thing at least but DTC still remain largely unregulated in the majority of jurisdictions (Hazel 2018). 

So how do we know that we aren't being cheated or stolen of our genetic information? That’s when the Federal trade commission comes into place. They take a serious look at all kinds of new services and ensure that companies have a clear, fair privacy policies, and standards for all kinds of at-home DNA testing (Schumer. 2017). They implement this by regulating DTC-GT companies and/or genetic information produced by those companies: (1) federal laws that can regulate genetic information; (2) federal agencies that can regulate DTC-GT companies; (3) state laws that supplement the federal laws and agencies; and (4) common law privacy torts, in particular, the disclosure and intrusion torts (Garner 2019). This gives us a peace of mind in knowing how its being regulated now here follows another question

Who has access to your information?

It all depends on the companies policies, some store your information in an anonymous way

How can you as a curious individual protect your information? 

You can do simple things such as read through the consent form as your about to take a genetic test. You can also do a policy research of the company and their rules for keeping your genetic information. Now the best thing that we can all do to keep our information secure is create a new bill or proposal such as the Genetic Privacy Act (GPA) . In which GPA claims that it must ‘‘grant a federal property interest in one’s own genetic material as well as the right to order the destruction of one’s DNA samples" (Spinello 2004). This was an attempt to address the privacy, confidentiality, and property rights relating to obtaining, requesting, using, storing, and disposing of genetic material. The GPA grew out of concerns over the vast amount of genetic information that is a product of the Human Genome Project (Troy 1997). This was a proposal set in the late 1990s imagine the vast group of information these direct to 

References

Garner SA, Kim J. 2018The privacy risks of direct-to-consumer genetic testing: A case study of                 23andMe and Ancestry. Wash. UL Rev. 96:1219.

Hazel JW, Slobogin C. 2018. Who knows what, and when: a survey of the privacy policies proffered by     US direct-to-consumer genetic testing companies. Cornell JL & Pub. Pol'y. 28:35.

“Health Insurance Portability and Accountability Act of 1996 (HIPAA).” 2022. Centers for Disease             Control and Prevention. [accessed 28Apr2023] www.cdc.gov/phlp/publications/topic/hipaa.html. 

Schumer C. 2017. Schumer reveals: popular at home DNA test kits are putting consumer privacy at            great risk, as DNA firms could sell your most personal info and genetic data to all-comers. [accessed     2023 Apr 26]. https://www.schumer.senate.gov/newsroom/press-releases/schumer-reveals-popular-       at-home-dna-test-kits-are-putting-consumer-privacy-at-great-risk-as-dna-firms-could-sell-your-              most-personal-info-and-genetic-data-to-all-comers-senator-pushes-feds-to-investigate_ensure-fair-       privacy-standards-for-all-dna-kits.

Spinello RA. 2004. Property rights in genetic information. Ethics and information technology.6:29-42.

Troy ESF. 1997. The Genetic Privacy Act: An Analysis of Privacy and Research Concerns. Journal of         Law, Medicine & Ethics. 25(4):256–272. doi:10.1111/j.1748-720X.1997.tb01408.x

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