Dr. Beata Halassy, a 50-year old PhD virologist, recently helped cure her recurrent breast cancer through careful medical self-experimentation. Specifically, she treated her cancer by injecting a series of laboratory-grown cancer-fighting viruses directly into the tumor, thus shrinking the tumor and making it amenable to curative surgery.
Dr. Halassy also attempted to share her successful result in a scientific journal, but her paper was rejected more than a dozen times before the journal Vaccines finally accepted it. The other journals’ objections were not about the scientific merit of her work, but were rather ethical objections—namely, “publishing her results could encourage others to reject conventional treatment and try something similar.”
After the journal Vaccines accepted her paper, Halassy gratefully acknowleged, “It took a brave editor to publish the report.” As Nature reported, “Halassy joins a long line of scientists who have participated in this under-the-radar, stigmatized and ethically fraught practice.”
The history of medicine is full of examples of innovators boldly experimenting on themselves. The most famous recent example is Dr. Barry Marshall, who drank a solution of Helicobacter Pylori bacteria to prove that stomach ulcers were caused by infectious bacteria, rather than stress. Dr. Marshall’s discovery revolutionized the treatment of peptic ulcer disease and earned him a share of the 2005 Nobel Prize in medicine.
The history of medicine is also full of examples of informed researchers who experimented with themselves with bad results, including death.
It is important to note that Dr. Halassy devised and followed her experimental protocol with the knowledge and cooperation of her own physicians: “Her oncologists were informed of her intent and agreed to monitor her condition, prepared to intervene if necessary.” Furthermore, as an expert in virus biology, she was as fully informed of the risks and benefits of her unorthodox treatment as any patient could possibly be.
Bioethicists Jonathan Pugh, Dominic Wilkinson, and Julian Savulescu have raised concerns that publishing papers like Halassy’s will encourage others with less medical supervision to try riskier forms of self-experimentation: “The availability of biotechnologies, and the prevalence of open-source science has led to the development of ‘bio-hacking’ communities engaging in various forms of self-experimentation.” They note that “other patients might be tempted to follow in Halassy’s footsteps and attempt an unconventional therapy, perhaps before using other standard therapies.”
But even if a self-experimenter is not as careful as Dr. Halassy, they still retain the right to bodily autonomy. This includes the right to decline conventional medical therapies and attempt unproven treatments, as long as they of sound mind and are making their decisions free of undue external influences.
Conversely, medical and scientific journals have the right to set their own editorial policies regarding research ethics—including what sorts of studies involving self-experimentation they will or will not publish. I understand that they may be hesitant to appear to encourage scientific practices they consider too risky for public to know about. But such an attitude risks coming across as paternalistic and disrespectful to the public.
Hence, I generally support publishing results of self-experimentation studies (including both positive and negative results) provided the work otherwise has legitimate scientific merit, and letting others learn as much as possible from the data. In the era of contemporary social media, the public will almost certainly eventually learn about these unorthodox studies one way or another.
Allowing self-experimenting researchers to publicize their methods and data in peer-reviewed scientific outlets will maximize the chances that the general public receives good information and minimize the spread of dangerous misinformation. Plus, this conveys the important message that the scientific establishment is not paternalistic, but instead willing to trust members of the public to make rational decisions for themselves. At a time that many in the public are skeptical of scientific authorities, a more open editorial policy towards such unorthodox (but scientifically valuable) research could go a long way towards restoring public trust.
This post was originally published on here
