Grieving families who lost loved ones in the tainted blood scandal claimed their relatives were “used for research” after historical notes were found in medical records.
It is alleged that some patients treated for the blood clotting disorder hemophilia in the 1970s and 1980s were treated with blood plasma that doctors knew could be contaminated and give them hepatitis.
They wanted to investigate links between the haemophilia treatment Factor VIII and the risk of infection, but some families claimed their loved ones were enrolled in these studies without their knowledge or consent.
The Factor 8 campaign group claims clinicians are lobbying to continue trials rather than stopping treatment, even after identifying the association between hepatitis and treatment.
Jason Evans, director of the campaign group, found notes about the research in his father’s medical records.
She has since found other families who found the same notes in their loved ones’ records.
Mr Evans, whose father died in 1993 after contracting both HIV and hepatitis C during haemophilia treatment, told the PA news agency: “It is appalling that hundreds of haemophiliacs across the country have knowingly contracted deadly viruses under the guise of scientific research.”
“These secret experiments, conducted without consent, show that individuals are treated merely as test subjects and not as human beings.
“It’s almost incomprehensible that this could happen on such a large scale over such a long period of time.”
Obtaining consent is “essential in research involving humans”, according to medical regulators, but families said neither they nor their loved ones gave consent to participate in such research.
A dossier of documents obtained through Freedom of Information requests, medical records provided by families, peer-reviewed journal articles and documents from public inquiries into the infected blood scandal reveals the timeline of the trials, which were led by a senior doctor who worked there. the now defunct Public Health Laboratory Service.
Documents show patients were monitored remotely for nearly a decade.
Hundreds of patients participated in the trials, but it is not clear whether they gave their consent.
Becka Pagliaro, from Waterlooville, near Portsmouth, said she was “shocked” when she found notes about the trials in her father’s patient notes.
His father, Neil King, contracted both HIV and hepatitis C infections while being treated for hemophilia. He passed away in 1996 at the age of 38.
“When I got his medical records I saw that he was part of this investigation, I know this is something he would not agree to, so this was done secretly,” Ms Pagliaro told PA.
“I was truly shocked; first of all, I wondered if I had obtained someone else’s medical records because I couldn’t believe what I saw.”
Janine Jones’ brother, Mark Payton, died at the age of 41 after contracting both hepatitis C and HIV infection.
“When I saw that the investigation was in my brother’s records, I thought: ‘What is this?’ After asking a few questions I couldn’t get anywhere,” said the 59-year-old from Warwickshire.
“It’s only been in the last few months that it’s really come to light; they were being used for research.”
Emma Frame, from South Shields, said her father never agreed to take part in the studies but found many references to them in his medical records.
Ms Frame told PA: “I have all the records, which is where I came across these works.
“There is no information about this doctor other than his name, the treatment he performed, and then the date. It was recorded a few different times with my dad.
“The information hidden in there is absolutely mind-boggling.”
Jeffrey Frame was co-infected with HIV and hepatitis C and died in 1991 at the age of 39.
Ms Frame said she discovered in the mid-1990s that the NHS had kept some of her father’s “samples”, which were not discussed with the family.
“They still had actual physical specimens of my father, who died many years ago,” he said.
Other families have also contacted Factor 8 after finding references to trials in their loved ones’ medical records.
It was revealed that experiments were carried out on school children with hemophilia without their parents’ knowledge and consent.
Hemophilia is a disease in which a specific protein that affects the blood’s ability to clot is missing.
Until the 1970s, treatment for hemophilia required plasma transfusion, which had to be given in the hospital.
This treatment has been replaced by a new product called factor concentrate, which can be administered as an injection at home.
The factor concentrate was produced by pooling and concentrating human blood plasma samples.
But by pooling samples from tens of thousands of donors, the risk of transmission of viruses, including HIV and hepatitis, increased significantly.
Hepatitis C is a virus that spreads through blood-to-blood contact and infects the liver. If left untreated, it can cause serious damage to the liver.
The Infected Blood Survey will publish its final report on May 20.
Largely between the 1970s and 1980s, tens of thousands of people were infected with contaminated blood through infected blood products or blood transfusions; however, some cases dating back to the early 1990s were also identified.
People were infected with hepatitis or HIV, and in some cases, both.
An estimated 3,000 people died as a result, while those who survived suffered lifelong health problems.
Des Collins, senior partner at Collins Solicitors, which represents 1,500 victims and their families, added: “There is now overwhelming evidence that the NHS failed patients in the 70s and 80s on a number of levels and in ways that we find absolutely shocking and disgusting.
“We look forward to Sir Brian Langstaff’s final Inquiry report within a few weeks, which will comprehensively reveal the wrongdoings committed.
“This will not only strengthen the case for compensation to victims and their families, but also highlight the lessons to be learned so that the mistakes of the past are never repeated.”