A blood scandal: scientific experiments exploited children as "guinea pigs"

A blood scandal: scientific experiments exploited children as "guinea pigs"

Documents seen by BBC News have shown the full scope of medical studies conducted on children in the 1970s and 1980s that used contaminated blood supplies.

They disclose a hidden realm of risky clinical trials using minors in the UK, where medical professionals prioritized research objectives above the requirements of their patients.

They included hundreds of individuals, went on for more than 15 years, and most of them contracted HIV and hepatitis C.

One of the survivors told the BBC that he had "guinea pig" treatment.

Children with blood clotting abnormalities participated in the studies, even though their families often did not give their permission. Most of the kids that signed up are no longer with us.

Records also reveal that despite the general knowledge that blood products were prone to contamination, clinicians at hemophilia centers throughout the nation continued to utilize them.

The UK had to import blood products from the US throughout the 1970s and 1980s due to a scarcity. HIV and hepatitis C, two potentially lethal viruses that assault the liver and cause cirrhosis and cancer, were among the high-risk donors who supplied the plasma for the treatments. These donors included drug users and criminals.

Although Factor VIII blood was shown to be quite successful in halting bleeding, it was also well recognized to be virus-contaminated.

A public investigation of the matter is underway. May is when the final report is due.

Luke O'Shea-Phillips, a 42-year-old "guinea pig," has mild hemophilia, a blood clotting condition that makes him more prone to bruising and bleeding than other people.

When he was receiving treatment at the Middlesex Hospital in central London in 1985 for a minor cut to his lips at the age of three, he contracted the potentially fatal viral virus hepatitis C.

According to documents obtained by the BBC, he may have been purposefully given the blood product—which his physician was aware may be contaminated—in order to be included in a scientific experiment.

The physician's goal was to determine the risk of infection from a novel heat-treated form of Factor VIII. Luke had heat-treated Factor VIII to halt his lip bleeding, despite never having received treatment for his ailment previously.

A correspondence between Samuel Machin, Luke's physician, and an additional haemophilia specialist was presented as evidence in the public investigation into the contaminated blood crisis.

In a letter to Peter Kernoff at the Royal Free Hospital in London, Dr. Machin described Luke's and the other boy's care and inquired, "I hope they will be suitable for your heat-treated trial."

A few months before, Dr. Kernoff had asked medical professionals in the area to recommend people who might be good candidates for clinical studies. More precisely, he said, they needed to be "previously untreated patients," or "PUPs" as they are referred as in the medical field.

Additionally, Dr. Machin wrote in Luke's medical file the moniker "virgin haemophiliacs" for them.

Luke told the BBC, "I was a test subject in clinical trials that might have killed me." There's no other way to put it: in order to participate in research studies, I had my therapy modified. My mother was never informed that this drug adjustment had caused me to have the deadly hepatitis C virus."

"To the scientific world, it was an outstanding benefit being a virgin haemophiliac," he said. "To be a clean petri dish to fully comprehend science through, I was without question a part of that."

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Luke had several blood tests as the medical experiment came to an end in the next years. His mother, Shelagh O'Shea, was appreciative at the moment the doctors informed her that they were keeping an eye on him.

In 1987, Drs. Kernoff and Machin published their results, which showed that heat therapy had "little or no effect" in lowering the chance of contracting hepatitis C.

Currently, Drs. Machin and Kernoff are both deceased.

Prior to his death, Dr. Machin provided testimony to the public investigation, verifying that Luke had been enlisted in Dr. Kernoff's research.

He denied doing this without the consent of Luke's mother. "This would have been discussed with his mother, however I acknowledge that standards of authorization in the 1980's was quite different to what it is now," said Dr. Machin.

She was "absolutely not" informed about the trial, Mrs. O'Shea said in response to the investigation. "I would not have thought of doing such a thing with a three and a half-year-old innocent youngster. "I never, ever would have permitted my child to be involved in a trial," she said.

Records show that while physicians were aware that Luke had hepatitis C in 1993, they did not inform him of this fact until 1997. While a test is positive, it notes in one medical record, "Have not discussed with patient or family."

Luke's medication worked, and he is no longer infected.

"Laboratory rats."

The results of the clinical studies, however, have sparked more serious worries.

Professor Emma Cave of Durham University's School of Healthcare Law says, "A trial would be seen as extremely difficult if those two factors haven't been achieved: a patient ought to consistently receive the best possible treatment and they should have given informed consent."

Professor Edward Tuddenham, a physician specialising in hemophilia at the Royal Free Hospital during the 1980s, echoed these concerns. When asked whether he believed that clinical studies in the 1980s had adhered to ethical norms, his response was a simple "No."

According to the BBC's investigation, Drs. Machin and Kernoff belonged to a group of medical professionals who had similar goals for their study.

A sizable group of boys with hemophiliac disease attended a specialized school close to Alton, Hampshire. With an NHS haemophilia facility on site, boys with bleeds may get prompt medical attention and resume their studies at the school for challenged children.

Their physician, the now deceased Dr. Anthony Aronstam, conducted extensive clinical research on his "unique" cohort of boys. Using three to four times more Factor VIII than a kid typically needs was the subject of one set of trials to see whether it would help lower the amount of bleeds the youngster experienced.

Prophylaxis, the term for this preventive therapy, included periodic injections with contaminated Factor VIII supplies along with recurrent blood testing. The boys received the high amounts of contaminated blood products without the boys' or their parents' permission.

Of the 122 students who attended Treloar's College from 1974 to 1987, 75 had already passed away from hepatitis C and HIV.

"They initiated a trial that required us to have way more of it than we needed, even though they knew the product was rife with hepatitis," claims Gary Webster, who was an unintentional participant.

Treloar's student Ade Goodyear, who attended from 1980 to 1989, said, "We were treated like lab rats." We all participated in a wide range of academics over our ten years at the school.

Another controversial experiment used placebo therapy. This meant that some boys received a saline solution instead of Factor VIII, since they believed it would avoid bleeding.

"When you think you've been given a treatment, this changes your behaviour," Gary said. "In football, you play rougher and run more. After a shot, a hemophiliac has a brief period of feeling somewhat indestructible. However, by altering your behavior with a placebo, you are only endangering your life."

He revealed to the BBC that missing shots resulted in consequences at school. "It would have meant their trials would have been flawed and so we, us kids, was designed to toe the line."

Dr. Kernoff searched for PUPs and virgin hemophiliacs, two groups of people who would make good study subjects. As a result, the individuals in his studies were increasing younger and younger. His goal was to enhance clinical practice via research. A trial concerned a baby who was four months old.

One of his investigations contrasted Factor VIII concentrates with Cryoprecipitate (Cryo), another blood plasma product, in terms of infectiousness.

Treatment for minor blood clotting disorders included the use of cryotherapy. Though in smaller quantities and from fewer donors, it did include the Factor VIII protein, which made it less dangerous.

In his quest for appropriate patients, Dr. Kernoff discovered Mark Stewart, his brother, and his father, who all suffered from extremely mild forms of von Willebrand's disease, a different kind of blood clotting problem. They often received cryotherapy.

Instead, Dr. Kernoff gave them all Factor VIII isolates as part of his test.

"Until we were given concentration it would be once a month you'd have a little nose bleed, as well as you'd go up and have cryo and that was that." Hepatitis C struck all three of them.

Following an illness that affected the liver, Mark's father and brother both passed away from liver cancer. It wasn't until it was too late for therapy that neither of them received word that they had the illness.

Mark said, "Angry is an understatement." "You know what's coming because your brother is in the second carriage, your dad is in the front carriage, and you are in the third chariot. It won't deviate from that course. Here's how hep C works. You'll get it."

A statement issued by Treloar's stated: "We await the publication of the infected blood inquiry, which we hope is going to offer our former pupils with the answers they have been waiting for."

On May 20, the investigation into the larger contaminated blood issue will come to an end.