ONE of the questions often posed to students of research ethics is whether medical data that was acquired through unethical or evil activities should ever be used to benefit patients or the wider society.

It is a question that has no easy answer, as it sets up two ethical theories against each other.

Utilitarianism, simply put, is only concerned with the ‘ends’, that is the outcome, and not the ‘means’ to that outcome. Deontology, simply put, is concerned with the ‘process’, and not the outcome. The process must be fair, just, and meet all the requirements of ethical acceptability.

Research activities

The aim of medical research is to provide new knowledge that will benefit patients and the wider society. At its current level of sophistication, it espouses the fullest protection for the participants in the research process.

However, there was a time in recent history when this was not so. The Nuremberg trials of doctors who conducted some of the most dehumanising research on Jews in concentration camps without their consent was the start of the road to protect the participants in research.

Since then, the process has evolved to now consist of some fundamental tenets, which include informed consent, fair selection of the participants in research, a favourable risk-benefit ratio, and the independent assessment of the research by a recognised research ethics committee. These tenets are critical in protecting patients and other innocent participants in research from exploitation.

Many of the medications, beneficial treatments, and technological innovations in medicine (for example, organ transplant, assisted reproductive technology, and surgical implantation of medical devices) were first subjected to research to ensure their effectiveness as well as their safety. They could never have been achieved were it not for willing participants in the research.

Gaining medical knowledge

However, some of the knowledge that we have gained from research were not obtained under the standards we now profess for research. Our understanding of how to protect against smallpox was obtained through the utter disregard for the welfare of a healthy eight-year-old boy who was deliberately injected with cowpox to discover if he would be protected against smallpox.

Our knowledge of some of the limits of human tolerance and survival (for example, extreme pain, cold and torture) were obtained by the wartime atrocities of Nazi doctors.

Further, during the 1940s, prisoners were injected with malaria to test the effectiveness of anti-malaria drugs, and hundreds of poor, rural black men in the USA with syphilis were deliberately misinformed and researched from the 1940s to 1972. In this infamous Tuskegee syphilis experiment, the aim was to learn about the natural course of syphilis without treatment, and resulted in severe bodily harm and the death of some men.

Our knowledge about the strains of hepatitis (A and B) and how they spread came through research at the Willowbrook State School for children with intellectual disabilities in Staten Island, New York. Ninety per cent of the children at the school were thought to have hepatitis and so the researchers opined that contracting the illness was inevitable. They therefore made no attempt to protect new children coming into the environment but worked instead to develop a vaccine in the process.

The question of ethics

So you can now see why the question posed to students of research ethics is difficult to answer. Should society refuse to put to good use the knowledge gained from the Tuskegee syphilis experiment, or that gained about how our immune system works against smallpox? Should we refuse to use vaccines that were developed in an unethical way?

Yet, one could argue that by utilising such knowledge and research outcomes for the benefit of society, it encourages unscrupulous researchers to try to become famous by conducting likewise unethical research.

Such is claimed against the Chinese scientist He Jiankui who last year used the gene editing tool CRISPR-Cas9 to edit the DNA of twin girls after their conception in an effort to make them impervious to HIV infection. An embargo on such processes has long existed due to the many unknown possible outcomes from the process (great concern for foetal abnormalities and bringing about changes that cannot be reversed). However, in justification, He Jiankui said that research scientists were going to conduct the experiment some day and he wanted to be the first.

So, how should society proceed? Should we refuse to use knowledge and products that were obtained by unethical human experimentation? In balancing this issue, it is not the researchers but the society that has to decide!

Dr Derrick Aarons MD, PhD, is a consultant bioethicist and family physician; a specialist in ethical issues in health care, research, and the life sciences; the health registrar and head of the health secretariat for the Turks and Caicos Islands, and a member of UNESCO’s International Bioethics Committee.