By: Lamis Abdelaziz
A recent concept
From the dark shadows of scientific history emerge the ghosts of infamous experiments that have forever changed the way we consider ethics in research. As students, we are conditioned to contemplate the ethical implications of any experiment, but formal research ethics hasn’t even been around for a full century. This field experienced significant evolution, driven by a series of notorious and inhumane research studies. These historic cases have served as powerful catalysts for developing ethical standards and guidelines that shape the way research is conducted today.
Experiments Before Research Ethics
We start our story by first considering historical cases like that of Roberts Bartholow, who practiced in the late 19th century. Bartholow’s treatment of a mentally disabled patient, Mary Rafferty, stands as a stark example of how vastly different research was done in the past and how far we have come in our understanding of research ethics in the present. In an astonishingly immoral experiment, Bartholow inserted electrodes into a hole in Rafferty’s skull caused by a cancerous ulcer to study the effects of electrical stimulation on her brain (Resnik, 2018). The consequences were heartbreaking as Rafferty endured extreme pain, distress, convulsions, and seizures before eventually falling into a coma and losing her life (Resnik, 2018). Despite the fact that the American Medical Association censured him as a result of this, his career did not suffer and continued to thrive. And he wasn’t the only one who wasn’t legally reprimanded for his atrocious actions (Resnik, 2018).
Giuseppe Sanarelli conducted ill-conceived experiments in the late 19th to early 20th century, which often went without appropriate consequences. Sanarelli’s actions involved injecting bacteria into five patients without their informed consent, all in the pursuit of testing his hypothesis that these bacteria caused yellow fever (Resnik, 2018). Tragically, the patients developed yellow fever symptoms, and three of them lost their lives (Resnik, 2018). However, no one was held accountable for what we would now deem a scientific crime (Resnik, 2018). Sanarelli’s actions, while widely criticized by many physicians of his time as immoral, didn’t receive any consequence or face any legal backlash (Resnik, 2018). In the shadow of these historical atrocities and injustices, we find a solemn reminder of the ardent need to preserve the integrity of our current research ethics and ensure that past transgressions are not repeated.
How Research Ethics Came to Be
What really pushed the evolution of research ethics was the Nazi research program and the Tuskegee syphilis study. They sparked a movement towards establishing guidelines and regulations for conducting research. The research program of the Nazis, carried out during World War II, involved outrageous experiments on concentration camp prisoners. Medical professionals subjected prisoners to brutal and often fatal procedures, such as forced sterilization, euthanasia, and sadistic medical experimentation.
At Ravensbruck concentration camp, doctors tested drugs’ effectiveness in treating gas gangrene infections, a significant issue for the German Army (Tyson, 2000). Victims were subjected to wounds mimicking battlefield injuries, which were then infected with bacteria (Tyson, 2000). The doctors intentionally worsened the infections by adding ground glass and wood shavings to the wounds, and they tied off blood vessels to simulate war wounds, causing immense suffering, injuries, and death (Tyson, 2000). At another concentration camp, Buchenwald, researchers developed a method of individual execution by injecting Russian prisoners with phenol and cyanide (Tyson, 2000). They tested poisons on inmates by introducing noxious chemicals into their food and shooting them with poison bullets (Tyson, 2000). Victims who survived these experiments were then killed for autopsies (Tyson, 2000).
After these brutal instances, the first significant international code of ethics for research on human subjects emerged in 1947 in the aftermath of the Nuremberg Trials, where German physicians faced trials for their participation in unethical medical experiments during World War II (UNLV, 2015). This Nuremberg Code highlighted the requirement for the voluntary consent of research subjects, scientific rigour, social value, and the minimization of harm (UNLV, 2015). Though not legally binding, the Nuremberg Code set a precedent by prioritizing the principles of informed consent and the need for research benefits to outweigh potential risks, ultimately establishing the foundational framework for subsequent declarations and laws governing research ethics.
In 1974, research ethics took a momentous step toward legal enforcement when the United States passed the National Research Act. This legislation marked a pivotal moment in ensuring accountability and legal obligations in the realm of research ethics (UNLV, 2015). This federal law established the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, a response to concerns about the ethical conduct of research involving human subjects (UNLV, 2015). It was first impelled by the Tuskegee Syphilis Study, where African American men with latent syphilis infections were left untreated under the false promise of “free healthcare,” even after penicillin became available as a cure, all without their knowledge or informed consent (Resnik, 2018). The establishment of the commission marked a monumental development in the ongoing evolution of research ethics, reflecting the commitment to safeguarding the rights, well-being, and dignity of individuals involved in scientific studies.
Research Ethics Today Are Still Not Perfect
In the present day, the profound impact of historical atrocities and the subsequent evolution of research ethics continue to cast a long shadow, shaping the ethical landscape of scientific inquiry. But what does general ethical approval look like today? In our quest to safeguard the rights, well-being, and dignity of research subjects, the process has become a rigorous, multi-faceted endeavor. Laboratories involved in in vivo experimentation or human trials of any kind must navigate a complex web of legal and ethical requirements. From justifying the concept and assessing risks to outlining potential, novel research outcomes, each Canadian experiment, and many globally, undergoes extensive ethical scrutiny, overseen by both institutions and corresponding federal and provincial legal forces.
The chilling truth, however, is that despite these comprehensive safeguards, some researchers still evade ethical standards. Instances of genetic editing experiments that blatantly violate established research ethics principles serve as unsettling reminders of the ongoing battle to maintain ethical integrity in research. It’s a paradox that despite our best efforts to make research an inherently ethical process, it often takes a severe violation of the human code to inspire subsequent legal restrictions. As technology advances at a breakneck speed, bureaucracy sometimes struggles to keep pace, leaving a haunting question in its wake: can we truly prevent future ethical transgressions, or will we always be racing to catch up with our own creations?