Before he was done, cancer researcher Chester Southam had injected HeLa cells (and other cancer-derived cells) into more than six hundred people in the name of “research”. Half of them were cancer patients. Very few of them, except those who were incarcerated gave consent for the research. He injected cancer cells into every gynecologic surgery patient who had the misfortune of stumbling his way. Rebecca Skloot aptly titles chapter talking about this research “illegal, immoral and deplorable”.
Since that time grant funding agencies have study sections made up of scientific peers to review grants not only for their scientific rigor, but for their ethics as well. Research institutions have Internal Review Boards that include members from the community to approve all animal and human subjects research. And, journals have peer review and ethical standards for all research. We have come a long way, but it never hurts to remind ourselves of the past and remember the lessons.
Southam’s “research” was conducted 16 years after the Nuremberg Code, which is an international ethics code designed to guide all human experimentation, had been created. The first line of the Nuremberg Code reads: “The voluntary consent of the human subject is absolutely essential.”People defending Southam’s acts argued that the Nuremberg Code applied only to Nazis and barbarians and dictators, not to doctors in the United States.
No society or country, the United States included, is above reproach. We would do well to remember the things we have done wrong: the Tuskeegee Syphillis study, Southam’s experiments, orphan trains, slavery, and even the 8-1 decision of the US Supreme Court to uphold Virginia’s forced sterilization law in Buck v. Bell (1927) and court’s decision written by Justice Oliver Wendell Holmes that included the infamous quote “three generations of imbeciles is enough.”
Just recently we learned that British physician Andrew Wakefield’s study that supposedly linked autism to the MMR vaccine was not only fraudulent, but also that he paid children at his son’s birthday party for blood samples that were used to generate some of the data (that supposedly came from referred patients) for the paper. The General Medical Council of Great Britain has investigated Wakefield’s conduct, and their report has been described as “the most appalling catalog and litany of some the most terrible behavior in any research” by the editor of The Lancet, the medical journal that published one of Wakefield’s key papers.
So, at no time and in no place are we above the egotism that can lead to unethical behavior in research. The point is this: The people who created the Nuremberg Code lived through horror. They saw really brilliant and otherwise reasonable people do horrible things to others.
- The voluntary consent of the human subject is absolutely essential.
- Voluntary—Individuals in many populations can give consent. However, ensuring that the consent is truly voluntary and informed is not a trivial task, but it is important. That consent cannot be made under duress. That consent cannot be obtained through bribery or it won’t be voluntary; it will be paid.
- Absolutely essential—There is no emergency that overrides this requirement of voluntary consent.
Checks, balances and oversight are important. That’s why we need to keep having these conversations. Constantly. Among scientists. Between scientists and the rest of society. Constantly.