Direct to consumer genetic testing: what are you giving away in return for your genetic fingerprint?

Home genetic testing kits are a quick and easy way of finding out more about your DNA, but what are the real costs of this service? When you send off a testing kit, you’re not just agreeing to hand over money, you’re accepting the emotional impacts that the results could have on your life, and you might even be signing a contract that enables your genetic data to be used in any way the company sees fit.

In April 2004, the Human Genome Project (HGP) achieved its goal of sequencing an entire human genome. In fact, proudly displayed in the Wellcome Trust just around the corner are over 100 volumes that show the enormity of this scientific success. Yet, just four years after the completion of the HGP, pioneering scientific research became a public-facing, money-making scheme, and direct to consumer (DTC) genetic tests were hailed ‘invention of the year 2008’ by Time magazine.

                                                          Just a few of the volumes of the human genome at the Wellcome Collection

                                                          Just a few of the volumes of the human genome at the Wellcome Collection

DTC genetic testing companies such as 23andMeMyHeritage and Color make money from the public’s curiosity to discover their genetic fingerprint. Each company might have a different twist: some focus on inherited diseases, others find unknown relatives while some even purport to identify child geniuses in the making. I’ll be focusing on genetic health testing in particular, and the issues this raises.

Time magazine reports that the intentions driving 23andMe are to “learn and share genetic secrets”, these seem at first glance relatively pure. But regardless of initial intention, we must consider the possibility of such companies to do harm to particular individuals and the wider public.

To the unwitting customer, the appeal is obvious - genetic testing is portrayed as sexy, exciting, real life science. Websites use enticing hook lines, “23 chromosomes, one unique you”“Amaze yourself… with our simple DNA test”, and customers buy into the idea that they could learn something interesting about themselves. But what happens to these customers if they find out that they are carrying genes which give them an abnormally high risk of developing cancer, heart disease, Alzheimer’s or diabetes? One thing is certain, they won’t be getting help from their chosen DNA testing retailer. Providing support falls well outside the remit of 23andMe and its contemporaries.

             23andMe idealise their simple and hassle free method. Image  here . 

             23andMe idealise their simple and hassle free method. Image here

In the NHS, genetic tests are only used in cases where they offer a particular advantage, such as to diagnose, or predict a treatable disease. Incidentally, they typically come hand in hand with genetic counselling, because such information can have serious effects on the individuals and families in question. One thing is clear, a doctor is far more qualified to deal with the intricacies of these results than an FAQ page.

This raises the question of whether direct to consumer genetic testing is at all ethical. The decision to take a life altering test is trivialised by an online ‘click and go’ ideology. What’s more, the kind of predispositions that these tests can flag might be altogether untreatable, rendering the test entirely unhelpful. If an individual has a high risk of developing cancer but ultimately no way to reduce this risk, and no way to tackle the problem until it eventually (if at all) arises, then knowing their situation in advance will do them no good. It could even damage them psychologically.

Clearly, giving public the power to discover their unique DNA fingerprint is a huge, and potentially dangerous step. How is it that in just four years, this scientific process has been handed over unquestioningly to online retailers? This is a key difficulty of the scientific endeavour – once a breakthrough is published, there are very few sanctions on how it is used, or by whom. As a result of this scientific discovery, which has enabled huge medical breakthroughs, the population is now potentially at risk.

Yet these companies profiting from science and technology remain completely unregulated in the UK. There is currently no specific regulation on DTC genetic testing from the British government. In 2010, regulatory guidelines on DTC genetic testing were introduced by the UK Human Genetics Commission (HGC), but this arm of the UK government was discontinued after 2012 as a result of cost-cutting measures. That means that currently, DTC genetic tests have their run of the market, and zero culpability. Customers don’t interact directly with any medical professionals, nor administrative staff, so have no one to turn to if they have questions.

What may have looked like a fun idea now looks a lot less appealing. DTC genetic tests don’t enable the customer to learn about their DNA, they allow a faceless company to profit from poorly executed science and the potential disruption of consumers’ lives. 

Unfortunately, it gets worse. One paper reports that the contracts that ‘protect’ consumers' rights, often sealed via an ‘I agree’ tick box, are completely amorphous. These contracts give the customer no power, stating that they can be changed at any time with a simple update on the terms and conditions section of the website. Ultimately, each company with such a contract can do what they please with the genetic information of their customers. A contract is defined as a mutual agreement, but in reality, these clickable online contracts have their terms entirely dictated by one party, the service provider, and largely disregard the interests of the consumer.

So, as well as affecting your personal life, these companies have access to and, theoretically, sharing rights of your DNA. Suddenly, the lack of regulation graduates from worrying to terrifying. It is clear that the emotional and social consequences of DTC genetic testing are so great that these companies cannot continue to go unchecked. Scientists have created this technology, and now it is vital that the government controls its use.

As technology and science develop, their co-option into society grows ever faster. Scientists need to be increasingly aware that whatever they are creating will go on to be used out of their hands, and potentially out of context, by unknown entities. As Douglas explains, scientists have a moral responsibility to society which stretches beyond their research goals and towards its potential consequences.  As a result, conversations between scientists and regulatory bodies are vital, so that risks can be identified in advance. As science continues to innovate, the relationship between scientists and policy makers must grow closer in order to prevent such gaping holes in public safety.