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Leading Data and Privacy Law firm Your Lawyers have been concerned to learn of an investigation into plans to sell Covid test samples for medical research.
The news was broken in November 2021, and reportedly involves Cignpost Diagnostics, trading as ExpressTest, who are understood to have conducted almost three million tests. It has been suggested that there are plans by the company to analyse samples from swabs and sell data to third parties, according to inews.
The private company is an approved provider of testing, and it has been reported that the company is now being investigated by the UK’s data regulator, the Information Commissioner’s Office (ICO). There was understood to be a tick box as part of the purchasing process for the test that formed as part of a large privacy policy with links to a research programme. This is understood to have since been removed and appears to be the matter at the centre of the investigation.
It is common for permissions for all sorts to form as part of extensive privacy policies and contractual terms. Such terms must be thorough in order to ensure that all the necessary information is properly explained. However, when documents are so big, there is the obvious risk of things getting misunderstood by the end users.
Most people probably still do not read every single word of a policy or a contract. What they should have are clear overheads, and this should especially be the case in this example of where Covid test samples could be sold on. Whether the intentions are good or not in terms of the reasoning to be for research and education into human health, people have a right to privacy and a right to clear control over their data. When it comes to medical information, which is one of the most private and sensitive types of data there is, this control is important. When it comes to data about DNA and real samples, it is even more important that people know what happens to it.
There is obviously a question over whether people have been clearly aware that data from their Covid test samples could be sold on. It is important that the ICO gets to the bottom of this as soon as possible.
We have already touched on this above, but the importance of clear consent is absolutely pivotal when it comes to our privacy rights. We understand the need for contracts and policies to be large, as all bases must be duly covered, so there is nothing wrong with this approach generally. But again, when it comes to something like Covid test samples being sold on, we would expect a significant focus on obtaining clear consent from people.
Whilst we do not know how clear any consent was in this case, the importance here is for the ICO to review the material fully and make their own determination. If the ICO determines that the consent for such matters is flawed, this needs to be addressed.
We understand that the company has responded to the media reports to confirm that they are fully compliant with data and privacy laws. It is now for the ICO to look into whether any plans to sell data can go forward or not.
As leading data privacy claims lawyers, we know all too well how important data privacy is. When people lose control over their information, it can have a real and devastating impact.
We will keep an eye on this developing story, and we hope that the matter of privacy and consent are carefully considered as part of the ICO investigations.
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