GENETIC testing kits sold online and in pharmacies are failing to protect consumers’ privacy and could be endangering human rights, researchers have warned.
Direct-to-consumer genetic tests which use DNA extracted from saliva samples to find out about everything from people’s ancestry to their susceptibility to male-pattern baldness are a global £8 billion industry and worth about £800 million in the UK.
Scottish academics Claudia Pagliari and Jacqueline Hall examined 50 tests being marketed to UK consumers, according to the investigative journalism website The Ferret.
They identified 14 kits designed for quasi-medical “health, wellness and lifestyle” that did not comply with all of the recommendations set down by the UK Government’s Human Genetics Commission.
The academics analysed the wording of the terms and conditions available on websites of over-the-counter tests and the consent statements relating to future uses of genetic information.
Although many people are willing to share their data for bona fide medical research, they are likely to be less happy about it being passed to third parties or sold to commercial data brokers.
They found that, in many cases, it was unclear how customers’ data might be retained or passed to third parties and how people could opt out.
In a small number of cases, simply buying the product was interpreted as an indication of the purchaser’s consent for the use of their personal data in “research”.
Glasgow-based Dr Hall, an honorary senior lecturer at Imperial College London and an expert in bioinformatics and laboratory standards for biomedical testing, said: “With some companies it isn’t clear that you are consenting to have your data used for research and the possibility to opt out of research and still buy the testing service is absent.
“You get these long terms and conditions; information may be in there somewhere but it’s not at all obvious.”
Dr Claudia Pagliari, who directs the University of Edinburgh’s Global eHealth programme, said: “Although many people are willing to share their data for bona-fide medical research, they are likely to be less happy about it being passed to third parties or sold to commercial data brokers.”
“It’s not inconceivable that this information may be finding its way to insurance companies with a vested interest in identifying people who might be costly in the future, which could lead to exclusion and has important human rights implications.”
She added: “Might you be prevented from getting a mortgage if some clever individual was able to identify you from data that has supposedly been anonymised?” asks Dr Pagliari.
Dr Helen Wallace, director of GeneWatch UK, which monitors developments in genetic technologies, said: “Gene tests are poorly regulated and people buying tests should be aware that commercial over-the-counter tests can give misleading information and may not guarantee their privacy”.
Dr Hall and Dr Pagliari called for an independent review into over-the-counter genetic tests.
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