April 18, 2024

Does the development of IVF have a murky past?

Was Patrick Steptoe, one of the famed creators of IVF, sensitive to research ethics?

Robert Edwards (L) and Patrick Steptoe (R) announcing the birth of the first IVF baby in 1978. 

British physiologist Robert Edwards, who died earlier this year, received the 2010 Nobel Prize in Medicine for his work in developing IVF. His colleague, gynaeologist Patrick Steptoe, would no doubt have shared it, but he had passed away in 1988.

The focus in the media  — even in academic papers — has been on the miracle babies for overjoyed parents. There has been much less discussion of the pair’s respect for research ethics in developing IVF. Edwards devoted many papers to defending his research against hostility and criticism by the medical establishment. And, as he predicted, “Most ethical disagreements have been vaporized by the pragmatism of 1,000,000 IVF babies and 1000 PGD babies.”

However, until now there has been no voice for the research subjects themselves. A self-published book by a former patient of Patrick Steptoe, Sandra Crashley, ought to raise some questions about the “crash through or crash” attitude of the IVF pioneers.

My Ordeal In Edwards’ Nobel Prize is not an academic work, and has been written more than 40 years after the events it describes. But Ms Crashley, who now lives in New Zealand, has a disturbing story to tell. She accuses Steptoe of ruining her health by removing one and a half of her ovaries without her consent and by his surgical incompetence. The landmark 1970 paper in The Lancet by Edwards and Steptoe which announced that they had recovered human eggs with Steptoe’s innovative laparoscopy barely mentions the ethics of how these were obtained.

“The volunteer patients were the women of infertile married couples numbering forty-six in all. Forty of them lived in Lancashire in the normal catchment area of the hospital, and six came from other parts of the country.”

Ms Crashley believes that she was one of these “volunteers”. She complains that the doctor treated her with patriarchal disdain when she was in hospital. Later, when she complained of continuing pain, he told her that she was a “coward” and not “stoical enough”. Another gynaecologist told her that Steptoe should have been sued for removing the ovaries. Her conclusion, however personal and tendentious, may deserve investigation:

“I had been simply used, as a piece of experimental meat as I laid anaesthetised on Steptoe’s operating table in that Oldham hospital. I wonder how many women that Steptoe operated on knew of the risks he was taking with their bodies and indeed their lives?  But they were all wives and daughters of someone else. They were not Edwards’ or Steptoe’s wives or daughters!”

If this is true, it echoes the abuses which accompanied the development of the contraceptive pill. In the 1950s this was tested on poor village women in Puerto Rico. They were not told that they were participating in a drug trial. Side effects, including the death of two women, were largely ignored by the researchers. Critics have compared these tests to the infamous Tuskegee syphilis study.

Michael Cook
Creative commons
clinical trials
IVF
research ethics