Should I worry about giving my DNA to labs that do genetic tests?

Should I worry about giving my DNA to labs that do genetic tests?

With a June 2022 update from The Conversation

The internet has made DNA testing a big global business. In the United States and Europe, millions of people have sent samples of their saliva to commercial labs in the hopes of learning something new about their personal health or lineage. Ancestry.com, 23andMe, MyHeritage, and FamilyTreeDNA are all industry leaders that sell their services online, share test results on websites, and even provide guides on how to find relatives in phone directories or share results on social media. They frequently claim ownership of your genetic information and sell access to their databases to large pharmaceutical and medical technology firms.

It's part of a troubling trend of corporations acquiring personal data about people and acting in their own best interests, not yours, in terms of internet health. So, test results can lead to crucial discoveries about your personal health, and they can also be shared for public-interest scientific research. But, before you give in to your curiosity, consider the following 23 reasons to keep your DNA private — one for each pair of chromosomes in a human cell. 

Subjective: Consumers appear to be content passing on their personal information to firms who aggregate and monetize it in the age of Facebook and Google. Consumers are increasingly paying to hand over their genetic code, their most sensitive individual identity, to DNA testing companies that monetize it in new ways.

Objective: A strong case is made for consumers to be aware of, if not extremely cautious when submitting their DNA to any consumer-facing genetic testing companies. Examples of potential issues include risks related to the potential of having such large genetic databases hacked, secondary use of consumer data, the accuracy of testing results, and open questions as to what happens when these types of companies are sold or reorganized in terms of consumer rights. A recent study published in PLoS ONE identified that many people are not overly concerned about exposure of their DNA data, but are distrustful of for-profit entities trying to use their information for profit. Recent articles outlined in the links below identify that genetic data is being used for pharmacy-related immunocology research. This is not necessarily bad, in fact, it could be great, but it is still important to understand the downstream use of your data.

Assessment: We do not yet fully understand the implications of having one's genetic information compromised. At the very least it is one of the most unique personal identifiers out there. Does that mean that these consumer DNA testing companies necessarily have bad intentions? Of course not, but this is a relatively new field and so it is important for us as consumers to be very well-informed, before providing informed consent. The McClatchy article makes the important point that “Ancestry.com customers should also know they’re giving up the genetic privacy of themselves and their relatives.”

Plan:

  1. Take the time to read the full McClatchy article. It provides a good outline of potential concerns with sharing your DNA profile.
  2. As suggested, before sending off your spit sample, be sure to read and understand Ancestry's entire privacy statement.
  3. Talk to your family about it. This affects them as well.
  4. Save any privacy and consent forms that you agree to in a safe place so that you have a copy of the terms at that time. Be sure to include the date in which they were signed.
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