CiRA Reporter vol.53
December 7, 2023
Masanori Oikawa*

Data and Ethical Research

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CiRA Reporter

Last year, John Snow’s work “On the Mode of Communication of Cholera” (translated by Taro Yamamoto) was published by Iwanami Library. As a classic in public health, it being translated and published in 2022 was probably in response to the recent public interest in infectious diseases. The book is an investigative record in which Snow, later recognized as the founder of epidemiology, delves into the causes of cholera that swept through 19th-century England. Since Cholera bacillus had not yet been discovered, Snow painstakingly pioneered and used meticulous epidemiological methods to investigate the residential area, living environment, behavior before disease onset, and water source of each patient. Based on his detailed analysis, he pointed out water from a specific well as the primary factor for the cholera outbreak.

From that description, his work was reminiscent of a medical detective**. Sherlock Holmes metaphorically expressed the importance of data in reasoning by stating, “I can’t make bricks without clay!” in The Adventure of the Copper Beeches. Just as bricks are made by excavating, crushing, shaping, drying, and firing clay, medical hypotheses are established by collecting, organizing, examining, critiquing, and structuring vast amounts of data.

In our research on ethics, we also go through this same process. We do this because we believe correct ethical judgments are based on accurate knowledge of facts. Especially when dealing with ethical issues in science, we strive to accurately understand scientific activities and critically analyze their impact on all entities involved to evaluate what constitutes ethically appropriate research conduct. To this end, we occasionally conduct interviews or questionnaires with scientists and other stakeholders involved.

However, what fundamentally differs from making bricks and medical research is that ethical norms are not established directly by accumulating facts. Rather, there is a logical divide between facts and norms (values). In other words, the discourse of ethics and morality surrounding “ought” cannot simply be derived from factual “is” statements. Nonetheless, there is also the question of whether it is possible to distinguish strictly between facts and values. Indeed, this issue is commonly known as the Is-Ought problem and has been a long-standing topic of debate in ethics.

My current interest is in how empirical data, especially the knowledge of non-experts, such as the general public, play a role in constructing ethical norms surrounding cutting-edge science and how such insights could (and should) be used to formalize norms. I believe this provides a vitally important perspective when exploring the potential of knowledge generated via citizen science.

 

*Dr. Oikawa was a researcher at the Uehiro Research Division for iPS Cell Ethic at the time of writing. His current affiliation is the Department of Medical Ethics, Tohoku University Graduate School of Medicine.

** It is perhaps worth noting that there is a biography of Snow titled “Medical Detective,” which may remind many of Snow as a detective through his investigative process.