The risks involved in genetic testing

DNA code analysisMore and more of us have wearable devices that monitor various aspects of our health and wellbeing.  These devices commonly come with some kind of diagnostic capability built into them.  Whilst ostensibly this should be seen as a distinct benefit, it is certainly not without significant risk.

For instance, back in 2014 a Belgian campaign was launched to urge citizens to not Google their symptoms.  The rationale was that people were not really trained to understand the responses they got, and as a result tended to veer towards the worst case scenario.

What is true for Google is especially true for the new breed of wearable devices, especially as the direct-to-consumer testing market is booming.

For instance, might unscrupulous companies exaggerate results in order to drum up a bit of extra business?  Might employers demand participation as part of well-being schemes?

The dark side of user generated data

A recent paper set out to use behavioral economics to explore how direct to consumer testing firms could exploit customers, and how this risk could be mitigated.

The team used a behavioral approach as traditional economics tends to assume a level of rationality that is often missing in healthcare.

This analysis found that patients often like to test for rarer conditions than a medical professional would advocate.  Likewise, end users typically want tests for incurable illnesses, which again is distinct from how doctors tend to operate.

The authors reason that this is all down to reassurance, with the scarier the illness, the more reassurance the user craves.  This is likely to become more commonplace as genetic testing enters the mainstream, as this kind of speculative testing is just what genetic testing revolves around.

Genetic tests also tend to be delving into the distant future in the hunt for gene-predictive diseases that have dire consequences.  It’s all great news for those selling the tests, but perhaps less valuable for the users themselves, especially as the authors suggest that the tests play on our emotional fears rather than our rational selves.

The market for such tests is already expanding significantly, and the paper reminds us of the potential for exploitation by companies tapping into the fears inherent in the market.  In a best case scenario, consumers would simply buy tests that weren’t really needed, but they could also by symptomatic of a wider mistrust of experts that we have seen throughout the western world in the past few years.

Hopefully studies like this will be taken on board by policy makers and we will ensure that such fears are unfounded.

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