The field of medicine has grown astronomically over the past century, and every aspect will continue to change as research and technology pro-gress. However, the research required to propel medicine into the future requires research subjects. There have been great travesties in the past, such as the U.S. Public Health Service’s untreated syphilis experiments and Nazi hypothermia experiments, which have greatly changed how research is conducted. The establishment of Institutional Review Boards (IRBs) and the Belmont Report have helped enforce guidelines for protecting those involved in research studies. A problem that remains, however, is compensation of test subjects for their involvement in a research study. On the basis of ethical principles proposed by the Belmont Report—respect for persons, beneficence and justice—it is not ethically justifiable to pay volunteers for their participation in research studies.
Respect for persons, as described in the Belmont Report, dictates not only that a person must have autonomy in decision-making, but also that those with diminished autonomy be protected. Autonomy requires that individuals have full control in their decision to participate in a research study without the influence of coercion or manipulation. As such, one must take into account the individuals who are participating as research subjects. Most people who volunteer as test subjects for monetary compensation do so because they have few other options. They need the money and are willing to do things they normally would not. The monetary incentive therefore serves as a form of coercion.
While these individuals may maintain full control over their decisions, the promise of money is enticing enough to have them participating in projects that may cause more harm to them than prove beneficial. Seeing as how most people who participate in paid research studies are of a lower socioeconomic class and are doing so only for the money, they can be considered vulnerable. True autonomy exists only in the absence of external influence and coercion. Both of these are present when monetary gain is a factor in electing to be a test subject.
As outlined in the Belmont Report, not only must the individuals involved be protected from harm, but efforts must also be made to secure their well-being. Harm must not be committed, and benefits must outweigh risks. The inherent problem with paying individuals to be test subjects is that oftentimes, the harm that may befall the patient does not represent a sufficiently strong reason to withhold from participating in, and thus getting money for, the study.
Furthermore, in regard to research involving drugs with possible therapeutic relief, those of lower socioeconomic class, including most test subjects, are much less likely to be able to afford the medications being tested should that drug become commercially available. It should also be noted that when a participant suffers injury from the study, they very rarely receive treatment for the injury. As was reported by Dr. Carl Elliot and Roberto Abadie in the New England Journal of Medicine’s “Exploiting a Research Underclass in Phase 1 Clinical Trials,” less than one-fifth of research facilities provide injured subjects with free care. Not only is harm being done, but there are also no sufficient mechanisms in place to secure the well-being of those involved.
In order to determine the efficacy of a new treatment, control groups must be utilized for comparison to the treatment in question. This implies that one group of individuals will benefit while others do not. Accordingly, the concept of justice refers to who exactly receives the benefits and who is selected to bear the burdens. As the Belmont Report states, when benefit is denied without good reason or burden is imposed unduly, an injustice has occurred. Subjecting study participants to the possible risks of a research study, all for the promise of money, is a clear injustice. These individuals are taking the full burden and are denied the benefits. As previously mentioned, because they are least likely to be able to afford the therapy in question once the study is complete, they are not receiving any long-term benefit from participating. These individuals may not have any other feasible option because the care being given through the research study may be the only care they have the possibility of obtaining. These studies take advantage of these individuals and provide them with false hope. Justice must be maintained with research, and when payment is offered in exchange for suffering, justice is not being upheld.
While I disagree with the current practice of paying study participants, I do believe that certain regulations and restrictions could be placed that would help keep this practice within ethically acceptable limits. The primary problem with the current system is the disproportionate amount of money that is given. If the amount of money paid was based on an hourly wage of a similar occupation, there would be a substantial decrease in the exploitation that is currently going on. Less people would feel inclined to partake in these studies simply for monetary gain. This would cause fewer health risks in the long run because only those who truly felt they would benefit health-wise from the study would be willing to participate. Simple restrictions like this would show great progress toward ethical treatment of test subjects.
The payment procedures that are currently in place encourage those partaking in a study to be subjected to harm in return for money. Monetary incentive makes participants vulnerable and constrains their consent, thereby stripping them of their autonomy. These individuals are also given the burden that comes with risks of the study without receiving any of the benefits. The denial of benefit and the undue burden is blatant injustice and should not be tolerated. Certain restrictions could be placed on the system that would ensure ethical treatment of those involved, but current standards are not sufficient. We must ask ourselves if the harm of a few justifies the possible salvation of many.
Scott Samona is a third-year at Michigan State University College of Human Medicine.