The DNA testing industry just wants your personal data – it does not care about your wellbeing

From inaccurate results leading to unnecessary double mastectomies, to zero provision of professional support, customers have been left behind, and receive no information on where their data ends up

Georgina Lawton
Tuesday 09 April 2019 11:03
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The global DNA testing industry is growing at an astounding pace, with experts estimating its value will hit $45bn by 2024. But regulating a market of this size is no small feat. Misleading information, lack of customer support and regular, viral news stories on genetic bombshells uncovered with one single saliva sample mean that now is probably a good time to petition for better warnings and tighter regulations – before things really get out of control.

The recent cases of two American women are examples of stranger than fiction DNA stories, both of which you’d imagine would garner support. Sadly that wasn’t the case. Maureen Boesen took a DNA test more than 10 years ago telling her she carried a BRCA gene mutation, one that increases the likelihood of falling victim to breast or ovarian cancer. But it was only after she had a double mastectomy that she learned the results of the test were wrong.

Shauna Harrison recently discovered she was the product of a sperm donor and sent off her data to genetic testing site to 23andMe. She subsequently found out that she has around 30 new siblings. Both women handed their DNA over for very different reasons, but both were motivated by an innate desire to uncover more about themselves and their families.

Harrison’s case highlights the emotional stressors tests like these can cause – how do you deal with such a large addition to the family, almost overnight? – while Boesen’s case raises difficult questions about whether we should be taking action on the results of health-related DNA tests, because we don’t know how quickly is the science behind them changing.

The New York Post reports that cancer risk counselor Dr Jennifer Klemp said that 30-40 per cent of those tested for BRCA 20 years ago had unclear results, whereas today that number is down to one or two per cent.

Genetics is an inexact science and the results are improving all the time – so how do we know if the tests on the market right now are medically sound? These profit-driven companies are unlikely to shout about potential medical errors, because arguably, they exist to make money from us first, and help our health second.

Today you can have the markers in your DNA analysed for a higher risk associated with hereditary cancers, caffeine and food intolerances, Parkinson’s disease, Alzheimer’s, thrombophilia (a blood clot disorder) and diabetes, to name but a few. But research suggests that health DNA tests are often wrong and misleading. For example, some services for detecting the BRCA gene only test for three out of thousands of possible mutations. Customers tend to overestimate the efficacy of these tests, interpreting negative results to mean they have no genetic risks whatsoever.

And none of the big consumer DNA testing sites offer any emotional support for unexpected results, or even direct customers to somewhere they could find some. In September 2018, the UK fertility regulator, Hfea called for more comprehensive warnings to customers about the risks involved. In a paper, it said that: “We found no DNA testing and matching services that mention that a need for professional emotional support may arise from relatedness matching, or via further inference from matching ... No service offers professional emotional support to users, nor signposts to other available support.”

But at around £100 a pop for a test, signposting is the least these companies can do. Consumers have had to mobilise themselves to create support networks, with Facebook groups like DNA NPA Gateway (NPA stands for Not Parent Expected) attracting worldwide media attention.

In the UK, genetic counselling is available on the NHS, but it usually follows when a doctor has referred a patient, so direct to consumer genetic testing means many people are out of the referral pipeline. Maybe it’s time for the companies to step-up and include this service in their packages.

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These tests also fail to provide information on where our data ends up. But when you use a direct to consumer DNA test, you are not just the customer, you become the product.

23andMe made a deal with GlaxoSmithKline in 2018, allowing the pharma giant access to its database of over 5 million people. And frighteningly, the Canada Border Services Agency was found to be collecting the DNA of migrants by using ancestry websites to establish the nationality of those they want to deport.

Both 23andMe and AncestryDNA says they will not share your data unless you “opt in”, but neither companies clearly explain who has access to your data, although 23andMe maintains that you “may choose to change your consent status to either take part in 23andMe Research or to withdraw all or some of your Genetic & Self-Reported Information from 23andMe Research” at any time. A well-hidden section on the AncestryDNA website shows that in 2017, it received 34 law enforcement requests and provided information to 31.

There’s no real established precedent with DNA data, so perhaps that’s why companies haven’t caught up to the many issues they’re creating around privacy and support. But then again, they probably don’t care. Once they have our data, they’ve got everything they need.

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