DOS 741 - Week 1 Discussion
Initial Post: Ethics, Emotions, and Guinea Pigs
The common concern about research study participants being treated as guinea pigs has roots in both ethical and emotional factors. The ethical side of medical research on patients has a long and frequently troublesome history dating back in all likelihood to the beginning of medical history, though the last century of medical care and medical experimentation has spawned the majority of principles and practices that now guide the ethical administration of medical research.1 Unfortunately, many of these formal ethical guidelines had to be developed in response to research gone astray ranging from criminal abuses of trust as in the Tuskegee syphilis experiments that started in the 1930s and continued for decades, to the outright crimes against humanity by Nazi medical researchers during World War II. Some of these sets of guidelines governing protection of human subjects include the Nuremberg Code, the Declaration of Helsinki, and many others. Several governing bodies and investigative panels have also been organized to guide and oversee the ethical conduct of research on human subjects, such as the National Commission for the Protection of Human Subjects of Biomedical & Behavioral Research.
All of these new developments help to address the actual practice of using humans as guinea pigs for research, but emotional factors still exist that may make patients feel as though they are being treated like guinea pigs. Butler relates her experiences and observations from the patient point of view, and suggests that the act of performing a randomized trial can make patients feel as though their specific disease is not important enough to researchers to warrant more than what they see as a roll of the dice.2 This can be discouraging to patients who are randomized into the control group because they may feel as though they are being denied access to the best possible care for completely arbitrary reasons of luck. They may even drop out of a clinical trial if they are not selected for a new treatment because they had pinned their hopes on what they saw as their best hope for getting better. These emotional factors need to be managed just as carefully as the ethical factors, so that patients understand that no matter what treatment they get, it will be high quality treatment. This can not take the form of emotional manipulation or bending the truth to make people feel better. It must be rooted in complete understanding of the research process and honest communication about the benefits and risks of every treatment option.
This combination of following ethical guidelines for study design and executing treatment with respect for patients emotional (not just physical) health can prevent both the reality and perception of research subjects being used as guinea pigs.
- Lenards N. Protocols & Studies in Radiation Oncology: History, Ethics and Consent. [PowerPoint]. La Crosse, WI: UW-L Medical Dosimetry Program; 2010.
- Butler, SL. Clinical research: a patient perspective. In: Principles and Practice of Clinical Research. 2nd ed. Burlington, MA: Elsevier; 2007: 145-146.