Humanization of biomedical research

Every research scientist has his or her own reasons for choosing a research path. Some of us love solving puzzles. Some want to figure out how things work. Others may be looking for that chance at a trip to Stockholm to pick up some bling. Regardless of our other reasons, most of us, I believe, were/are driven in some small part by the desire to impact society. In biomedical sciences, that desired impact is often centered around improving the quality of human life, whether by understanding disease mechanisms, developing diagnostics to detect crises before they become critical, or discovering a drug that improves treatment–or maybe even provides the first major therapy–for a disease. Whatever the angle, the goal is improving human life.

The irony is that biomedical research–especially basic research–has a way of dehumanizing its driving impetus. We break down individuals and populations into diseases and conditions. We divide the person into systems, the systems into organs or compartments, the compartments into cells, the cells into collections of information or even individual molecules. It is perhaps merely logical to reduce an immensely complex system into simpler components. But maybe it is also a defense mechanism, a way to keep us from being overwhelmed by the slow pace of progress in the face of an intense need, by the thought of the lives affected by or lost to a disease in the time it took to design, run, and analyze an experiment that failed miserably.

Putting a name, a face, a personality with a debilitating or deadly disease can be distracting. It is one reason I have stayed away from cancer research in my postdoc. My mother’s life and death with metastatic colorectal cancer made it difficult to sit through intros for seminars and group meetings related to the subject during the last half of my Ph.D. training; at the time, I could not imagine working on the subject without a constant tinge of pain or guilt. (Fortunately, there are many highly qualified individuals working in that area and many other subjects in need of high quality basic biomedical research.) Others, though, find inspiration in such situations. They see working on a disease that has affected someone they know personally as a way of honoring that individual’s life, strength, and courage.

Just as with the system or disease of interest, we often lose the story and the human connection of the experiments and reagents that make our work possible. In particular, if we are working with cell lines or samples derived from human donors, these reagents are stripped of identifying marks. Although generally intended to protect the privacy of the donor, it has the unintended consequence of stripping away its humanity as well. Several months ago, Abel Pharmboy (a.k.a. David Kroll) suggested that steps should be taken by scientists to honor the gifts that make our work possible. He comments, “[it] might be considered maudlin by some, but I think is very important for basic scientists to understand that much human suffering was associated with the tools they now use.” And he had the opportunity to do that very thing this year, in attending the memorial dedication service for Henrietta Lacks–an African American woman, anonymous and unkonw for decades after her death, whose cancer cells, without her knowledge or consent, were used to generate the first immortalized human cell line, an astounding milestone in biomedical research.  Abel graciously and eloquently shared his experience. He states, “Put simply, this was the single most moving day in my life as a scientist.” Maybe it is time we all start putting a bit of that human element back into biomedical research.

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13 Responses to Humanization of biomedical research

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  2. Dr Becca says:

    Really lovely post, BB. This is hitting quite close to home for me, as I’m currently doing massive lit searches on a new (to my general area of study) illness for a grant. I’ve decided to start with the human literature, and I’m seriously, like, reading PubMed and crying thinking about all the people afflicted by this disease. It makes me so sad, but I’m also finding it incredibly motivating. Hopefully all this emotion can be channeled into writing a super research plan!

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