Unethical experiments’ painful contributions to today’s medicine

Unethical experiments’ painful contributions to today’s medicine

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Chinese scientist He Jiankui sent shockwaves around the world last year with his claim that he had modified twin babies’ DNA before their birth. The modification was made with gene editing tool CRISPR-Cas9, he said, and made the babies resistant to HIV. Scientists from China and around the world spoke out about the experiment, which many say was unethical and not needed to prevent the virus. The scientist had also been warned by peers not to go down this path.

His experiments, which are still clouded with the uncertainty of his claims and his whereabouts, open a Pandora’s box of questions around ethics in experiments with humans — even though these dilemmas aren’t new.
Historic examples of human experimentation include wartime atrocities by Nazi doctors that tested the limits of human survival. Another led to the creation of the hepatitis B vaccine prototype. Wendell Johnson, who made several contributions to the field of communication disorders, tried to induce stuttering in normally fluent children. In the 1940s, prisoners in Illinois were infected with malaria to test anti-malaria drugs.
Medical ethicists and researchers commonly hold that there are seven general rules for an ethical experiment involving humans, explained Govind Persad, assistant law professor at the University of Denver.
Experiments should be socially valuable and scientifically valid, and people have to be selected fairly and respected. The risks and benefits to participants and the benefits to society need to be weighed against each other, and there needs to be an independent outside review of the ethics of the experiment, Persad said.
A decade later, pediatrician Dr. Saul Krugman was asked to do something about rampant hepatitis in the Willowbrook State School for children with intellectual disabilities on Staten Island, New York. Krugman found that over 90% of children at the school were infected.
Contracting hepatitis was “inevitable” and “predictable” due to poor hygiene at the overcrowded school, according to the first study Krugman and his colleagues carried out in Willowbrook. He decided to try to develop a vaccine, and parents were informed and asked for consent.
Krugman’s experiment helped him discover two strains of hepatitis — A and B — and how these spread, A spreading via the fecal-oral route and B through intimate contact and transfer of body fluids. Fifteen years later, he developed a prototype hepatitis B vaccine.
In his paper, Krugman agrees with criticism that the ends do not justify the means but says he does not believe that to apply to his own work, since all children at the school were constantly exposed to the risk of acquiring hepatitis.
The reports that followed these experiments were used to draw up laws and governance bodies, such as institutional review boards. These boards are made up of a small group of representatives from the institution that would like to carry out the experiment and one non-scientific community representative; they decide whether an experiment is ethical and should go ahead.
Edwards says the institutional review boards offer a small one-time assessment of the situation. She hopes for more ongoing ethical review practices during experiments, like data safety monitoring, used mainly in clinical trials. This monitoring tool can halt an experiment at any time.
Chan also sees the need for more discussions around ethics. He’s experiment and the second international human genome editing summit in Hong Kong, where He publicly defended his work, showed that there “is a real will to have these discussions seriously [and] to consider both what the benefits are but also to consider very carefully the conditions under which we should be using these technologies,” she said.b
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