I recently joined a book club, and last week we met virtually to discuss The Immortal Life of Henrietta Lacks by Rebecca Skloot.
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.
Note – this is an experimental posting format. I’ve thought about increasing the number of posts I commit to per week, but I don’t want to add unnecessary work if I’m not willing to stick it out. Let’s be honest: sometimes it’s really hard to get a single post out each Monday that I’m satisfied with, so increasing my posting frequency just to for the sake of increasing my output is a terrible idea. I will run a short experiment to see how easy it is for me to get out a Friday Round-up for the next month. If the experiment goes well, I’ll consider making it a part of the regular rotation. You can find the first round-up post here from April 24th, and the second here from May 1st.
I was pretty happy with last week’s roundup, but I felt like sharing some less heavy, though no less important, links this week.
Here is my round-up list for the week ending on May 8th:
This was such a cool story to read and is worth signal-boosting. An important lesson I’ve learned in my time reviewing community-based research ethics applications is that we should be sensitive to how stories get told. As a general rule, our default should be that communities of people are the authors of their own stories. That’s not to say that outsiders should never tell stories outside of their experience, but instead we should actively promote stories told by members of a community and we should be mindful of how characters get portrayed. Characters will often get saddled with stereotypes and short-hand signifiers in the pursuit of easily conveying information to an audience, which has the dangerous possibility of spreading misinformation or perpetuating harms to the community. Therefore, I’m happy to share this story about a game that is created by the deaf community and tells their story for others to learn from.
As I drafted today’s message, I was also reminded of Loud as a Whisperfrom Star Trek: The Next Generation’s second season. One of the guest stars was a deaf actor who also brought the story penned by his wife to the producers.
Until this vlogbrothers episode from John Green, I hadn’t heard about the weird world of Singamajigs. I share this not because of the weird toy, but because it’s a heartwarming story of how the vlogbrothers community of Nerd Fighters came together for John’s brother’s birthday to find a rare version of a Singamajig that sings Smash Mouth’s song, All Star. Not only did they manage to find one, but the community also sent in some fun projects that they attempted as gifts to Hank Green. With all the bleak news circulating around, this was a welcomed bit of frivolity and celebration.
This video is super-super short, but packs a punch. It’s an important reminder that just because something is different from how we do things, it doesn’t mean it’s weird or wrong. That’s the beauty of different cultures – they provide us with new and exciting ways of seeing the world around us. It’s also a good reminder to check our own biases and received habits, because they are often just as arbitrary.
In the ethics of conducting research with human participants, there is the concept of “informed consent.” At its foundation, informed consent is the process of communicating a sufficient amount of information about a research project to a prospective participant so that the prospect is able to decide whether they want to consent to being a participant in a study. There is a lot of nuance that can go into selecting what gets communicated because you have a lot of necessary information that needs be shared but you don’t want to share so much information that the participant is overwhelmed by the volume of information.
When I review research ethics applications, I am privy to a lot of information about the project. In the course of reviewing the project, I have to make judgement calls about what should be included in the informed consent letters that participants read. It would be counter-productive if the participant had to read all the documentation I am required to read when reviewing an application, so we use certain best practices and principles to decide what information gets communicated as a standard, and what is left in the application.
There is, of course, some challenges that we must confront in this process. As I said, when reviewing a research project, you have to balance the needs of the project with the needs of a participant. All research, by virtue of exploring the unknown, carries with it an element of risk. When you involve humans in a research project, you are asking them to shoulder some of the risk in the name of progress. Our job as researchers and reviewers is to anticpate risk and mitigate it where possible. We are stewards of the well-being of the participants, and we use our experience and expertise to protect the particpants.
This means that one challenge is communicating risk to participants and helping them understand the implications of the risks of the research. In many instances, the participants are well aware of risks posed to their normal, every-day lived experiences and how the research intersects with it. The patient living with a medical condition is aware of their pain or suffering, and can appreciate risks associated with medical interventions. A person living in poverty is acutely aware of what it means to live in poverty, and understands that discussing their experiences can be psychologically and emotionally difficult. Our jobs (as reviewers and researchers) is to ensure that the participant is made aware of the risk, mitigate it as much as we can without compromising the integrity of the research program, and to contextualize the risk so that the participant can make choices for themselves without coercion.
The concept of informed consent is hugely important, arguably the most important component of research projects involving humans as participants. It is an acknowledgement that people are ends in themselves, not a means to furthering knowledge or the researcher’s private or professional goals. Indeed, without a respect for the autonomy of the participant, research projects are likely to not be moved into action even when research funds are available.
All of this is a preamble to discuss the anger I felt when I read a recent CBC report on how anti-vaxxer advocates are using the concept of informed consent as a dog-whistle to their adherents, and are using informed consent as a way of both furthering their awareness and raising money with well-meaning politicians and the public.
In fairness, I can see the chain of reasoning at play that tries to connect informed consent with concerns about vaccines. For instance, in the article there is a photo of supporters of a vaccine choice group with a banner that reads “If there is a risk there must be a choice.” This sentiment is entirely consistent with the principles of informed consent. The problem with this application is that the risk is not being communicated and understood properly within context, and instead fear, misinformation, and conspiracies that lead to paternalistic paranoia are short-cutting the conversation. Further, the incentive structures that are borne out of the economics of our medical system are doing little to address these fears. Because so little money is flowing from the government to the medical system, doctors are forced to maximize the number of patients they see in a day just to ensure enough money is coming into the practice to pay for space, equipment, staff, insurance, and supplies. Rather than seeking quality face-to-face time with a patient, doctors have to make a choice to limit patient time to just focus on a chief complaint and address questions as efficiently as they can.
I don’t think it’s all the doctor’s fault either. I think we as patients, or more specifically we as a society, have a terrible grasp of medical and scientific literacy. I don’t have a strong opinion about what the root cause of this is, but some combination of underfunded schooling, rapid technological innovation, growing income disparities, entertainment pacification, a lack of mental health support, increasingly complex life systems, and precarious economic living in the average household are all influencing the poor grasp people have about what makes the world around us work. Rather than being the case that we are hyper-specialized in our worldviews, I think it’s the case that “life” is too complex for the average person to invest time into understanding. Let’s be clear, it is not the case that the average person isn’t smart enough to grasp it (even if sometimes my frustration with people leads me to this conclusion). Instead, I think that people are pulled in so many directions that they don’t have the time or economic freedom to deal with things that don’t immediately pay off for them. People are so fixated on just making it day-to-day and trying not to fall behind that it becomes a luxury to have the leisure time to devote to these kinds of activities.
What this results in, then, is the perfect storm of ignorance and fear that congeals into a tribal call to rebel against the paternalism of a system that is ironically also too cash-strapped to allow the flexibility to educate people on the nature of risk. People don’t have the time and ability to educate themselves, and doctors don’t have the time to share their experiences and knowledge with their patients.
Within this gap, opportunistic charlatans and sophists thrive to capitalize on people’s fears to push their own agendas. This is why bad actors like the disgraced former doctor Andrew Wakefield and movement leader Del Bigtree are able to charge fees to profit from speaking at anti-vaccination events. I’m not saying a person who spreads a message should do it for free. What I am saying is that they are able to turn a personal profit by preying on people’s fears while doing little to investigate the thing they claim to worry about.
We must find a way to communicate two simultaneous truths:
There is an inherent risk in everything; bad stuff happens to good people, and you can do everything right and still lose. Nevertheless, the risks involved when it comes to vaccines are worth shouldering because of the net good that comes from it and the risks themselves are vanishingly small.
In the 22 years since Wakefield published his study and the 16 years since its retraction, there has not been any peer-reviewed credible evidence that supports many of the claims given by the anti-vaxx movement. The movement is predicated on fears people have of the probability of something bad happening to them or their loved ones. The motivation behind the fear is legitimate, but the object of the fear is a bogeyman that hides behind whatever shadows it can find as more and more light is cast on this area.
The anti-vaxx ideology knows it cannot address head-on the mounting scientific evidence that discredits its premise, and so it instead focuses on a different avenue of attack.
This bears repeating: the anti-vaxx ideology cannot debate or refute the scientific evidence about vaccination. We know vaccines work. We know how they work; we know why they work. We understand the probabilities of the risk; we know the type and magnitudes of the risks. These things are known to us. Anti-vaxx belief is a deliberate falsehood when it denies any of what we know.
Because of this, the anti-vaxx ideology is shifting to speak to those deep fears we have of the unknown, and instead of dealing with the facts of medicine, it is sinking its claws into the deep desire we have for freedom and autonomy. It shortcuts our rational experience and appeals to the fears evolution has given us to grapples with the unknown – the knee-jerk rejection of things we don’t understand.
Informed consent as a concept is the latest victim of anti-vaxx’s contagion. It’s seeping in and corrupting it from the inside, turning the very principle of self-directed autonomy against a person’s self-interest. It doesn’t cast doubt by calling the science into question. Instead, it casts doubt precisely because the average person doesn’t understand the science, and so that unknown becomes scary to us and we reject or avoid what brings us fear.
Anti-vaxx ideology is a memetic virus. In our society’s wealth, luxury, and tech-enabled friction-free lives, we have allowed this dangerous idea to gain strength. By ignoring it and ridiculing it until now, we have come to a point where it threatens to disrupt social homeostasis. Unless we do something to change the conditions we find ourselves in – unless we are willing to do the hard work – I fear that this ideology is going to replicate at a rate that we can’t stop. It will reach a critical mass, infect enough people, and threaten to undo all the hard work achieved in the past. We have already seen the evidence of this as once-eradicated diseases are popping up in our communities. The immunity and innoculations have weakened. Let’s hope those walls don’t break.
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.