As well as being the 50th anniversary of Sgt Pepper’s Lonely Hearts Club Band, the legalisation of abortion and the partial de-criminalisation of homosexuality, 2017 marks 50 years since the publication of Human guinea pigs: experimentation on man, which lifted the lid on unethical medical research.
Back in 1967, there was a widely held view that the benefits of the medical advances gained through human experimentation outweighed the risks to – and rights of – individuals, leading to situations in which patients were not always aware that they were being used for research. This was accepted, normal practice around the world. But Maurice Pappworth, author of Human guinea pigs and essentially a whistle-blower, challenged this view.
The book is not a comfortable read. Page after page, it describes examples of unethical research – 78 in total, many of them in the NHS. Injecting polio virus, malaria parasites, bacteria causing meningitis and cancer cells into people who had not given consent, or were not competent to consent… stopping the heart of an 80-year-old person to get better quality angiograms… resuscitating a research subject who went into cardiac arrest and then simply resuming the experiment. How could these things have happened in a caring profession? Especially given the existence of the Nuremburg Code, which initiated modern approaches to research ethics after the horrors of human medical experiments in the World War II.
Pappworth wrote in a relentless, deadpan style to drive his point home. The book had a huge impact, leading to stronger research ethics requirements, approval processes and peer review, and editorial rules. It was powerful because Pappworth named names, referenced articles on unethical experiments and quoted researchers, drily describing (or sometimes rationalising) what nowadays seem extraordinary, sickening risks. Six publishers rejected the book deciding they were not willing to risk the libel laws before Pappworth found a publisher willing to take the risk.
The doctors Pappworth wrote about were almost certainly aiming to improve patient care, although issues such as ambition, collusion with ‘group think’ and general attitudes towards respecting patients may also have driven their behaviour. It is well known that factors such as social norms, institutional cultures and conflicting incentives can and do get in the way of the best intentions of even the most intelligent and virtuous of us.
Noticing and managing these factors, which are often unconscious, are essential abilities for anyone holding a responsible position in health care. Alumni of our Top Manager programme will attest to how challenging it is to do this is in practice, and how difficult it can be to authorise oneself, and create the conditions for others, to constructively challenge institutionalised power. Sometimes it is difficult even just to notice who is being left without a voice.
The anniversary of Human guinea pigs is a time to reflect on how – however difficult – we must continue making the effort to notice and challenge questionable institutional culture. Of course, culture in the NHS has changed hugely since the 1960s – look at the patient safety movement or the ongoing shift towards empowering patients, communities and staff – and safeguards in place today would make it nearly impossible to get permission for unethical experimentation – for example, experiments on women between 36 and 40 weeks pregnant involving cardiac catheterisation or measuring abdominal aortic blood flow, both under x-ray control. But in our work, we continue to see that attention needs to be paid to culture, norms and beliefs and that challenging issues need to be brought into the open and discussed, otherwise there is still a risk that hospitals will be just workplaces (for staff) rather than places of healing (for patients).
The NHS responded to the challenges raised by Pappworth by showing its best side – setting high standards for research ethics – and its worst – Pappworth was vilified and ostracised by many of his peers. How would the NHS respond today? Pappworth’s experience reminds us we should not underestimate how much those on the side of prevailing institutional norms hate being challenged, and how much courage it takes to decide not to be silenced and not to be part of the majority. The public inquiry into Mid Staffordshire NHS Foundation Trust reminds us that this is still a real issue today, and underlines the need for a culture that puts patients first and supports staff to do the right thing. For that to happen, leaders need to notice what is going on in their organisation’s culture and engage with the mechanisms that subtly prevent change for the better. Perhaps Human guinea pigs should be required reading for them.