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On July 25, 40 years ago, Louise Brown was born in Oldham, northwest of England, the first baby conceived by in vitro fertilization, that is, by artificial insemination outside the body of the woman. It was a medical breakthrough and caused great commotion. The gynecologist Patrick Steptoe and the reproductive doctor Robert Edwards, who had made the miracle possible with their team, were celebrated.
But of course, such a complex medical procedure does not fall from the sky. Every scientific progress is based on research, and the Edwards and Steptoe team has been working on the breakthrough at the Oldham Clinic and at the University of Cambridge for nearly a decade. Every clinical research needs volunteers. And that was a lot in this case. Many women have had to endure a lot – and today no one knows it.
More recently, Martin Johnson and Kay Elder, former partners of Edwards and Steptoe, scrutinized their records from 1969 to 1978. In the nine years prior to the birth of Louise Brown, the team of Steptoe had taken 475 samples of eggs and transferred 112 embryos to the uterus. A total of 282 women participated in the program.
Two babies were born, one of them is Louise, another was born in early 1979. The numbers clearly show how far the researchers groped in the dark: the procedure was very experimental and subjects had virtually no chance of having a child
"Consent to the Enlightenment"
does not mean that the study was contrary to ethics. Basically, the standards of medical ethics allow studies that do not serve the treatment of patients, but only the development of new methods. "However, the requirements for physician accountability are particularly high," says Heiner Fangerau, director of the Institute of History, Theory and Ethics of Medicine at the University. from Düsseldorf.
Above all, subjects must be informed in detail of the project and agree to participate. "Informed consent" is what we call. This is stated in the Helsinki Declaration of the World Medical Association, probably the best-known ethical guideline for human research. "The statement sums up the standards that were discussed long before their first publication in 1964. It has been widely published. I think it's unthinkable that in the big research institutions nothing is known about it, "says Fangerau," for me the question of enlightenment in this context is the crucial point. "Because there are differences here."
Misunderstanding "
Lesley Brown – Louise's mother – was incredibly unconscious, and her book," Our Miracle Called Louise, "states that she was unaware that no child was ever conceived outside of the womb.He had just imagined that there were already hundreds of IVF babies.Great MacDonald, the mother of the second child, knew that the process had not yet been successful, but she had never told Steptoe or Edwards how many times that had been attempted. Was an opportunity for her to have a child, she says in an interview with Johnson and Elder.
One can not say "informed consent" in either case. "Behind the word awakening is the idea of driving from understanding to maturity immaturity. You must explain to people that they are participating in a research project and not in a therapy. And in 282 people tested, we can not talk about an attempt to cure, "says Fangerau.
"Therapeutic misunderstanding" is the term used when subjects do not understand the difference between clinical research and therapy. "The term was coined in the 80s. But the perception that many people in need or hope are participating in studies, was discussed much earlier," says Fangerau. Not only do Lesley Brown and Grace MacDonald seem to have encountered this phenomenon in the IVF research program.
"Were there difficult subjects?" Johnson asked a former nurse from the Steptoe team in her research on Oldham's clinical notes. "No," answers the answer, "they were all so happy to be here and happy that we tried to help them." This, too, sounds like a therapeutic misunderstanding.
"Many gynecologists refer us to their patients" Edwards wrote in a letter to Richard Mahoney of the Ford Foundation, also suggesting that doctors were hoping their patients would be helped in Oldham
Treatment was not entirely risk free
In an interview with Johnson, John Webster, then a team gynecologist, recalls Steptoe's patient education: "I think little has been said, except that it was an experimental project was and (…) that it was not successful. It was like, you know, just risk it. "This suggests that information was given, but not for education." "Nothing indicates that it was said that patients were one by the hundreds."
Treatment does not It was not without risk.In preparation for ingestion, the subjects received in almost all cases a hormonal treatment to stimulate the ovaries.Recovery of laparoscopic ova is a minor surgical procedure. moreover, there was a risk that the fetus would not develop properly.
All women treated with Steptoe and Edwards had to agree to amniocentesis and pregnancy consent if pregnancy was noted. [19659002 was clear to women
When the story of IVF is told, it's usually a story about the happiness of Lesley and Peter Brown who were holding their daughter Louise in their arm And that is the story of the. heroism of scientists who, against all difficulties, have attached themselves to their vision and have made IVF a success. Edwards' and Steptoe's intentions were certainly good – they wanted to develop new medical procedures to help people. You have also thought about ethics, Edwards wrote about it in various publications. But the suspicion is obvious that it is difficult to implement. In the heat of the moment, they may have overestimated the chances of healing themselves.
Finally, it turned out that IVF is now an established method. But you did not know it at that time. 280 women paved the way for IVF undergoing medical interventions because they hoped to get pregnant. There was little chance for them – the method had never worked before. These women are also part of the history of IVF.
(Tages-Anzeiger)
created: 25.07.2018, 17:50
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