What you should know when submitting your DNA to genetic testing labs
With a April 2019 update from a Wired 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 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.
A link to the article titled Researchers Want To Link Your Genes And Income—Should they?Along with a team of European collaborators, Hill sifted through the UK Biobank data to find about 286,000 participants who had answered a survey question about household income. Using that information they conducted something called a Genome Wide Association Study, where they looked at 18 million places in the genome to see which ones matched up with higher paychecks.
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.
Direct-to-Consumer Genetic Testing and Potential Loopholes in Protecting Consumer Privacy and NondiscriminationResults from a qualitative study revealed insights about consumer expectations of DTC genetic testing data privacy in general. Through interviews with 13 DTC genetic testing consumers, Haeusermann et al found that perceptions of privacy risks were dependent on whether individuals felt they belonged to vulnerable social groups that are more exposed to discrimination.
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 article titled, Genes for Good: Engaging the Public in Genetics Research via Social MediaThe Genes for Good study uses social media to engage a large, diverse participant pool in genetics research and education. Health history and daily tracking surveys are administered through a Facebook application, and participants who complete a minimum number of surveys are mailed a saliva sample kit (“spit kit”) to collect DNA for genotyping.
DNA test kits: Consider the privacy implicationsCompanies are advertising at-home DNA test kits that promise intriguing insights into your past (“Where did my forebears come from?”) – and your future (“Do I have the genetic markers for certain medical conditions?”). If you’re thinking about buying a kit for yourself or a family member, the FTC has advice about protecting the privacy of the sensitive information that DNA tests reveal.
DNA Test Service Exposed Thousands of Client Records OnlineDNA-testing service Vitagene Inc. left thousands of client health reports exposed online for years, the kind of incident that privacy advocates have warned about as gene testing has become increasingly popular.
Direct-to-Consumer DNA Testing Company Exposed Personal Information OnlineAn article from the HIPAA Journal