What you should know when submitting your DNA to genetic testing labs
With an update from a PLOS ONE article
Subjective: An abstract from the McClatchy article: "In the age of Facebook and Google, consumers seem comfortable surrendering their personal information to corporations that aggregate it and monetize it. But Ancestry and other DNA testing companies have added an audacious tweak: Consumers are now paying to hand over their genetic code, their most sensitive individual identifier, to companies that could monetize it far into the future. "
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.
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.”
- Take the time to read the full McClatchy article. It provides a good outline of potential concerns with sharing your DNA profile.
- As suggested, before sending off your spit sample, be sure to read and understand Ancestry's entire privacy statement.
- Talk to your family about it. This affects them as well.
- 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.
A systematic literature review of individuals’ perspectives on privacy and genetic information in the United StatesConcerns about genetic privacy affect individuals’ willingness to accept genetic testing in clinical care and to participate in genomics research. To learn what is already known about these views, we conducted a systematic review, which ultimately analyzed 53 studies involving the perspectives of 47,974 participants on real or hypothetical privacy issues related to human genetic data.
How do you control where your DNA data resides and how it is shared online?It is the assessment from this article that at this time it is very difficult to understand and control who has access to your genetic data. There are not enough privacy protections in relation to what companies who analyze your genetic data are then able to do with that data after they have gathered it.
A link to the original article on McClatchy DC BureauIn the age of Facebook and Google, consumers seem comfortable surrendering their personal information to corporations that aggregate it and monetize it. But Ancestry and other DNA testing companies have added an audacious tweak: Consumers are now paying to hand over their genetic code, their most sensitive individual identifier, to companies that could monetize it far into the future.