A SOMERSET patient who previously said his DNA was taken without consent while he was hospitalised with Covid-19 is now claiming the procedure had been carried out “illegally”.
Stuart Brown initially said his DNA was taken without consent while he was in a coma due to Covid at Yeovil Hospital in 2021.
He said his wife was not given the full details while he was in a coma and was told “there were possibly direct benefits” for her husband.
Mr Brown said they only took the DNA for a test – GenOMICC research project sponsored by the University of Edinburgh to understand the genetic factors that determine susceptibility to, and outcome from, in critical illness - that would check if certain people were more likely to get Covid.
He said he suffered from PTSD and received a £3,000 compensation.
Now, Mr Brown is also claiming the procedure was “illegal” as “the GenOMICC study changed the paperwork and did not get approval to take DNA from incapacitated patients outside of Scotland.
He said: “It was legal in the UK up until 2019, then they changed the paperwork, and it is illegal now.
“They only have approval to take DNA in Scotland, but not in the rest of the UK.”
Previously speaking about the time he was in a coma due to Covid-19, Mr Brown said: “My wife was telling me one thing and the hospital another.
“Six months out of the coma, I get a letter saying they wanted to ‘regain capacity consent’ “My wife consented because she was told it was beneficial for me and that’s where I started digging out the information.
“It was read to my wife she didn’t have a script read to her. It was more of a conversation saying I would be a good fit for this study, which would help people like me, in a coma, as there were possibly direct benefits for me.
“So my wife agreed. They said they would take the DNA sample and help me, but there wasn’t really any help for me. They took the sample for the study.
“My problem is with people lying to get the DNA sample.”
He also added, “why would you agree to a compensation if there was nothing wrong with the procedure?”
A spokesperson for Somerset NHS Foundation Trust previously said: “We made mistakes in how we enrolled Mr Brown onto the national GenoMICC study while he was a patient in the intensive care unit at Yeovil District Hospital during the COVID-19 pandemic in November 2021.
“We have said sorry to Mr Brown for these mistakes, and we apologise again today.
“The process for gaining consent from patients who are not able to consent themselves, is first via their next of kin, and then through a ‘regained capacity process’ once the patient has regained capacity.
“Because Mr Brown’s enrolment onto the trial took place during the pandemic, consent from Mr Brown’s next of kin was taken over the phone.
“The protocol is for the clinician to talk through a script that is ethically approved and provided by the national study, and to then email a longer patient information sheet to the person giving consent.
“We emailed the patient information sheet to Mr Brown’s next of kin and sent the consent form to them in the post after confirming the address.
“In line with the protocol, we also made a record on the patient’s record.
“This was not in sufficient detail, therefore not a complete account, and we amended the record to reflect this inaccuracy.
“Once the patient has regained capacity, and is able to consent themselves, we send them a ‘regained capacity’ letter, consent form and patient information sheet which enables them to confirm their continued participation in the study or withdraw.
“It took us too long to send Mr Brown this information, which we sent in May 2022. In addition, we mistakenly sent a previous version of the patient information sheet and the consent form.”
Mr Brown is now also saying: “The University of Edinburgh sponsors Genomicc. Genomicc can then request DNA. They had permission for Scotland but not for the rest of the UK.
“It was legal in the UK up until 2019, then they changed the paperwork, and it is illegal now. They only have approval to take DNA in Scotland, but not in the rest of the UK.
“Yeovil Hospital was made aware of the situation on Friday, August 30.”
Mr Brown is now asking the following questions: “Have you stopped taking DNA, if not when are you going to?
“How many people have been affected by this?
“The GenOMICC study changed the paperwork a number of years ago and did not get approval to take DNA from incapacitated patients in the UK.
“Therefore, every bit of DNA taken since the first unauthorised change has been taken illegally according to the Mental Capacity Act.”
A spokesperson for Somerset NHS Foundation Trust said: “In April 2020, during the COVID-19 pandemic response, Yeovil District Hospital, along with many other NHS trusts, was asked by the Chief Medical Officer, via the Department of Health and Social Care, to set up and deliver the GenOMICC study, which was marked as an urgent public health study.
“All regulatory approval documentation issued by the Health Research Authority and Research Ethics Committee was received to allow for study set up and recruitment at Yeovil District Hospital.”
A University spokesperson said: “We are respectful of participants’ right to withdraw their consent at any time, and we can confirm that all procedures relating to the giving of consent, and its withdrawal, have been correctly followed for all participants in this study."
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