Some spectacular advances in medicine have come about because investigators were willing to take chances. Over 200 years ago Edward Jenner demonstrated his vaccination process in public only after conducting experiments on his infant son (1). Stymied by an abundance of detractors and lack of an animal model yet convinced a bacterium caused human gastritis, Barry Marshall deliberately infected himself to confirm his hypothesis (2). These often heralded efforts literally saved countless lives and prevented untold suffering.
A recent article by Antonio Regalado reveals the risk-taking tradition is alive and well today as a scientist attempts to genetically engineer himself (3). The account conveys a fascinating story of ambition, opportunity and elastic ethics.
A Google search of the term ‘research involving human subjects’ will show that the scientific community adheres to a code of conduct and provide examples as to how institutions ensure investigations under their auspices are as safe and productive as possible. Before any experiments begin written descriptions of the project rationale, operational plan and safeguards to manage foreseeable adverse events must be reviewed and approved by an Institutional Review Board (IRB). This oversight is a unique proactive research peer review intended to flag many as many problems as possible before they emerge. However, the success of the system depends on the good will of investigators. Dr. Marshall reveals in his Nobel Prize biography (2) that he did not seek approval from the hospital ethics committee for his seminal self-experiment. Equally noteworthy, he also informs us that, although imminently knowledgeable about the diseases he sought to vanquish, he was caught off guard by the severity of his consequent illness. Clearly, all turned out well for Dr. Marshall and humankind, but his candor offers a rare insight into scientific research, perceived risk vs. reward and human nature.
A large number of institutions conduct research involving human subjects and while we hope they all operate at a consistently high standard, it seems likely some are more reliable ethics sentinels than others. Ambition and conflicts-of-interest could influence the process at several levels.
Whether it is ethical to permit or encourage investigators to conduct experiments on themselves is apparently open to interpretation. Even the brief description of the process used to force DNA into the body of a scientist-volunteer (3) reminds us that unanticipated unpleasant outcomes are possible. Although some self-experimenters are attracting interest from high-profile investigators, I suspect that other research groups would be troubled by such work and avoid any impression they condone such efforts.
Perhaps DItoY science will yield results so spectacular that most persons will feel the ultimate ends justified the ethically ambiguous means. They had better be good if we are prepared to allow some to risk life and health to achieve them.
(1) G. Williams. 1960. Virus Hunters. Alfred A. Knopf, New York. (Page 24).
(2) Biography of Barry J. Marshall, Nobel Laureate, 2005. https://www.nobelprize.org/nobel_prizes/medicine/laureates/2005/marshall-bio.html
(3) Antonia Regalado. 2017. How One Scientist is Using Technology to Try and Hack His Genes to Transform His Body. MIT Technology Review, 10 January 2017. http://www.businessinsider.com/brian-hanley-of-butterfly-sciences-testing-gene-therapy-2017-1