September 27, 2018

SOUND OFF | The Bioethics of Biomedical Research

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Biomedical research and engineering, genetics, biotech — these are all disciplines rising in popularity among research, academics and scientists, and with a similar goal in mind: they emphasize the use of multi-disciplinary teams to ensure quick “bench-to-bed” results which translate basic scientific research to the medical community and then to the patient. Yet these rising disciplines are gaining ground at such a fast pace that many scientists and physicians have begun to neglect an important aspect of translational research: the native and marginalized populations around the globe that are heavily involved in the medical research, yet rarely reap its benefits.

The most illuminating examples of excruciating difficult ethical questions can be seen in the emerging study of the human gut microbiome. Researchers now believe  that this microbiome, composed of millions of diverse bacteria in the human gut, plays an integral but not yet fully understood role in human health. It may hold the key to understanding  a wide variety of chronic diseases, among them allergies, asthma, inflammatory bowel disease, and most directly, obesity. In order to study these diseases, researchers compare the gut microbiomes of people  in developed countries and people in undeveloped countries, with the hope that they may find some kind of disparity that would show how we, in developed countries, develop chronic illnesses related to the gut, while those elsewhere do not.

However, several problems arise when dealing with the ethical issues surrounding the experiments. For example, in many developed nations today, it is required to sign a waiver prior to participating in an experiment, and it is likewise generally agreed upon that participants should receive some sort of compensation for taking part in any experiment or even just for handing in a sample. However, it is often difficult to translate the hard science and health benefits when explaining the situation to locals, and the compensation is often misunderstood, so local populations are sometimes cheated out of money. Alternatively, even if the right amount of money was received, it would be of minimal benefit to a community with an infrastructure lacking the goods to provide to local populations. For example, college students often receive some money in exchange for participation in a psychological study. That same amount of money would be essentially worthless to rural populations in sub-Saharan Africa, or other global regions in particular interest of the biomedical community.

So what can scientists and physicians do while conducting their research? After all, the participation of local populations is integral to many aspects of global health research. To ensure that local populations are properly being compensated and in respect to their local culture, scientists and physicians need to devise creative compensation methods. For example, scientists and physicians can conduct their research in conjunction with NGOs and other organizations, so that direct health benefits such as vaccinations can be delivered in exchange for sample and data collection. However, this provokes the thought that locals are pressured to participate in the study (who perhaps otherwise would not participate) in exchange for instant and free medical services.

The most important outcome is that scientists and physicians need to ensure that their research will ultimately benefit the local populations in some way. It would be unethical to bulldoze over a local population’s sovereignty and culture for research results that would only benefit developed nations. Perhaps a discussion with the government or leader of the local population would help scientists devise a form of compensation beneficial to that population. Or perhaps policy and guidelines would form a pipeline that delivers the product of that research back to the local community. Whatever the solution is, scientists and physicians need to devise creative ways to correctly and ethically compensate local populations for their contributions to overall global and biomedical research.