Tag: Research

Vigilance and the Price of Progress

I recently joined a book club, and last week we met virtually to discuss The Immortal Life of Henrietta Lacks by Rebecca Skloot.

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-/21 – "The Immortal Life of Henrietta Lacks" by Rebecca Skloot. This is a must-read book. The legacy of Henrietta Lacks through the HeLa cell has touched nearly all areas of medical research over the last 60 years, yet few know anything about the woman behind them. This book gives a full picture of the life of Henrietta and her children. But more than that, it delves into the development of medical and research ethics since Henrietta's death, including a deep dive into the many atrocities committed against Blacks in the name of science and progress. I am going to recommend this to the ethics boards I serve on, because our work has come out of the injustices people have suffered, and REBs exist as a promise to do better in the future. #reading #book #books #selfimprovement #nonfiction #learning #history #hela #henriettalacks #research #medicine #ethics #researchethics

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The book has been circling my periphery for some time, coming up in recommended reads lists for at least a year. When it came time for me to suggest the next read, I chose this book without really knowing much about the subject. I was vaguely aware that Henrietta Lacks’s cells were instrumental to many scientific and medical advances, and I was aware that the obtaining of the cells was likely done unethically, as was the case for many Black Americans who found themselves under medical scrutiny in the middle of the last century. Since I review research ethics applications on two ethics boards I serve on, and because of the ongoing conversation around Black lives, I thought this would be a good book for us to read and learn from.

In short, the book is fantastic as a piece of writing.

But the story of Henrietta Lacks and her family is heartbreaking. The book paints a vivid portrait of who Henrietta was, and gives intimate glimpses into the life of her decedents. It also presents a comprehensive history of both the rise of research ethics since the end of World War Two and of the many advances made by science thanks to Henrietta’s cells. However, those advances were done with cells acquired neither with proper consent nor compensation. For many years after her early death, Henrietta’s name became lost to obscurity outside of her family, but everyone in the cellular biology community knew her cells because of how abundant they were. In a tragic twist, the very medical advances that gave way to better understandings of radiation, viruses, and vaccines, were often not available to the impoverished Lacks family. While the Lacks’s remained stuck in poverty, others profited.

I highly recommend everyone read this book.

As we discussed the book last week, I realized that this was an example of why it’s important to enlarge the domain of one’s ignorance. Learning about history shouldn’t be an exercise in theory; often we forget that history is presented as an abstraction away from the stories of individual people. If we forget about their individual lives, we can sometimes take the wrong lessons from history. As the saying goes, those who don’t learn from history are doomed to repeat it. In this case, we continue to exploit the voiceless, and profit on the backs of the disenfranchised – those who don’t have the power to speak back.

Reading books like this gives me a greater context for history, and it helps me understand the lived-history of people. I review research projects to understand the ethical consequences of our search for knowledge. If I lack a historical context – the history of how research was and is carried out – then I run the risk of perpetuating the same injustices on the people of today that the research is meant to help.

Research is supposed to be dispassionate, but we must understand and situate it within its proper historical context.

In an allusion to Picard, I close with this: constant vigilance is the price we must pay for progress.

Stay Awesome,

Ryan

The Value of Probing Assumptions

I was on a consultation call a few weeks ago about an ethics application.  The project was seeking feedback from participants about access to specific mental health information, and in my feedback to their application, I noted that their demographic question concerning the gender of the participant was probably too narrow.  The applicant asked for some advice how to address the comment.

On the one hand, they considered dropping the question as it a.) didn’t obviously connect to their research question, and b.) the literature supporting this branch of mental health was pretty well-studied in terms of incidence rates for the condition along the sex dimension, so they might not learn anything new by asking for the participant’s gender or sex.  On the other hand, if they left it in, they had to contend with whether they should use sex or gender as the focus of the question.  Since the mental health topic they were researching was a medical condition, it seemed like (biological) sex was the more salient feature, whereas my feedback suggested that if they chose gender, they would need to ensure it was inclusive.

While discussing the implications on the phone, I tried to tease out what the purpose of the study was.  Their study was collecting qualitative information about how people access information.  In the context of the demographic information, they weren’t seeking to know how a person’s sex/gender relates to the condition itself.  But, I wonder aloud, it seemed the purpose of the study was to understand how people seek information, which could arguably be influenced by one’s culture, behaviour, socialization, and experience of how the world treats them.  In that way, you would want to focus less on a person’s physiology and instead you might discover interesting differences in how a person seeks information based on their life-experiences.

The applicant noted that they started the phone call intending to drop the question from the survey, and through my line of questions and probes, was convinced to keep the question and modify it to be more inclusive.

I am not telling this story as a normative push on how we should conduct inquiry (though by reading through the lines, you should get a sense of how I feel about the topic).  Instead, I share this story as an example of why posing good questions is important to remove ambiguity and clarify thought.  One of the goals of our ethics board when we review applications is to make implied premises explicit so that we can be sure of what we take as a given when we set out to study a research question.  We often default to accepted practice and proceed with common tools, but sometimes we don’t think carefully through the implications of what using those tools means.  By leveraging my outsider status, I have an opportunity to get the applicants to explain concepts and lines of reason without assuming I share the same understanding of the material that they do.  This helps to spot those areas where the project is weakened by unsupported claims and assumptions.

Stay Awesome,

Ryan