Last week I discussed how I created a video training series for one of the ethics boards I serve on. All told, I’d estimate it took me around twenty hours to sketch, film, edit, and publish the series (this is an ad hoc estimate; sadly I didn’t do any time tracking to appreciate the effort). While I’m comfortable with the filming, I noticed a particular period of the work that created a bit of a flow state for me.
On the last day of editing, I was up against a bit of a deadline to finish the videos and push them out to the trainees. I admit that the deadline helped me to focus more (or at least resist the temptation to get distracted), but I noticed that when I was editing the videos, I hit a bit of a flow state. It’s not that I found the tasks particularly challenging, but there was something about the rote, somewhat monotonous task of watching and cutting footage that helped me move through the videos fairly quickly. It was almost 4-hours of editing before I felt like I should take a break to stretch and shift my mind to something else – the time seemed to go quickly. Then, after my break, I returned for another multi-hour stretch to finish off the last of the videos for the rendering queue.
It’s not often that I feel myself working in this state, where time gets away from me for hours at a time. In fact, most of the time I feel somewhat disengaged with my work, and I have to apply discipline in order to work on tasks. This was a rare example of working on something that felt right.
I joked with my wife that I wish I found a job as an editor, but I was only half joking. The lesson I take from this is to be mindful with how I engage with activities that trigger flow, and find a way to go back to that state in other areas of my work.
Last week, I created a video training series for the ethics board I’m on to help with onboarding new board members. Prior to COVID (the “before-times”), I would book out a meeting space on a Saturday morning to train new board members for 4-5 hours at a stretch. However, since we have been unable to meet face-to-face for the last year (we moved to remote in March 2020), it’s been difficult to help new members get up to speed. On the one hand, we could have accomplished the same training agenda using a video conferencing platform, however on the other hand, sitting on a training call for 4-5 hours is not a great experience for anyone involved.
We decided to go about the problem differently and embraced a flipped classroom format. By having training videos available, members can go through the lecture material at their own pace, then we can have a shortened video call to answer questions and do practice scenarios. Once I make the videos, they are always available, so there is no further cost to my time, except when we want to update content.
I was able to marry my experiences on the board reviewing ethics applications with my experiences vlogging over the last 7 years. Side note – our first podcast episode was released 7(!) years ago, on March 10th, 2014. Time flies!
Thanks to the time spent filming, editing, and publishing video content, I was able to put together an hour and a half series of short videos to go through the main points of being on the board and reviewing ethics applications. I had done something similar when I created a short onboarding video for my work at the college a few years back, but this was the first time I plotted out a multi-video series to create something resembling a course.
Admittedly, the fact that I did it myself shows in the quality. I don’t have the hardware to easily read scripts naturally, so I spoke extemporaneously with a set of notes, which shows in the final versions. Also, I don’t have a lot of experience with graphic design and after effects, so the shots can be a bit static. Nevertheless, it’s hardest to go from zero-to-one, from nothing to something. Everything after this point can be incremental improvements.
It was an interesting experience to marry these two different parts of my life. Vlogs, even the podcasts that I did with Jim, are more personal, with little actual expectation that people will see it. The videos Jim and I made were more for myself as a creative exercise. But these videos I’ve created are intended to help pass on some of what I learned while on the board and prepare them for the work we do.
Here we are at the dawning of a new year, which for me means it’s time to post an update on my reading over the last year. For my previous lists, you can see them here: 2019, 2018, 2017, and 2016. It’s hard to believe this is my fifth reading list!
The Age of Surveillance Capitalism
The Bookshop on the Corner
Call Sign Chaos
The Hitchhiker’s Guide to the Galaxy
Guns, Germs, and Steel
Anything You Want
Jocko Willink & Leif Babin
The Code. The Evaluation. The Protocols
How Will You Measure Your Life
Clayton M. Christensen
The Last Wish
The Expectant Father
Armin A. Brott & Jennifer Ash
The Coaching Habit
Michael Bungay Stanier
The Immortal Life of Henrietta Lacks
Robert A. Caro
Crime and Punishment
Every Tool’s A Hammer
Dr. Sue Johnson
The Kite Runner
My Own Words
Ruth Bader Ginsburg
Stillness is the Key
The Oxford Inklings
The Infinite Game
The Ride of a Lifetime
As a Man Thinketh & From Poverty to Power
A Christmas Carol
The Little Book of Hygge
Overall, I’m happy with how the year went for reading. In reviewing the list, a few things stood out to me. First is that I surpassed my total books read for the year over 2019 by 13 entries. While we can certainly have a discussion about the merits issues of using the number of books read as an accurate key performance indicator of comprehension or progress, it was nice to see that I stepped things up a bit. I was fairly consistent in making my way through the books, with only a dip in April (likely because of the life-adjustment that came from working from home) and the silence seen from mid-July to the start of September thanks to the birth of our son in early-August.
I’m also happy to see that I read fewer self-help and business books last year and instead dove into more fiction, memoirs, and books about history. In my previous roundup, I had commented about wanting to be more intentional with my reading after feeling burnt out on certain genres of books.
One significant change in my reading habits this past year was that I joined a reading group/book club. A friend organized it just as things went into lockdown in March. We meet online every few weeks to discuss books selected in a rotation by the group. I commented earlier that I read 13 more books this year than last, and I’d attribute the book club to being the single biggest reason for the boost in completions (we cleared 12 by year’s end). Here are the books that we read:
Call Sign Chaos by Jim Mattis
Symposium by Plato
Gulliver’s Travels by Jonathan Swift
How Will You Measure Your Life by Clayton M. Christensen
The Immortal Life of Henrietta Lacks by Rebecca Skloot
Crime and Punishment by Fyodor Dostoyevsky
The Kite Runner by Khaled Hosseini
Kitchen Confidential by Anthony Bourdain
The Oxford Inklings by Colin Duriez
As a Man Thinketh & From Poverty to Power by James Allen
A Christmas Carol by Charles Dickens
Nicomachean Ethics by Aristotle (finished in the final days, though we haven’t met to discuss it yet.
I’d normally create a separate post about my top reads for the year, but I’ll include it here for simplicity. In chronological order of when I finished, my top 5 reads of the year are:
Alexander Hamilton by Ron Chernow (among my top reads ever; I was fortunate to see the stage play before the shutdown in March)
Call Sign Chaos by Jim Mattis (the first book I chose for the book club; I was struck by how Mattis talks about self-education and reflection)
The Expectant Father by Armin A. Brott & Jennifer Ash (since we were expecting this year, this book was a nice roadmap to know what to expect, and it provided some comfort along the way)
The Immortal Life of Henrietta Lacks by Rebecca Skloot (I recommend everyone read this book; it reminds me of the important work we do on the research ethics boards I sit on, and why we must be critical of research)
My Own Words by Ruth Bader Ginsberg (I started this collection of writings and speeches before RBG died, and was sadly reminded after finishing of what we lost in her death).
This was a pretty good year for reading. It felt good to get lost in more fiction, and I’ll have things to say in the future about the value I’m finding in reading as part of a group. In the meantime, Happy New Year, and it’s time to keep tackling my reading backlog.
I took a new step today in the evolution of my personal giving. For Giving Tuesday 2020, I finally set up my first set of recurring monthly donations. Now, every month the The Food Bank of Waterloo Region and the Brantford Food Bank will each receive a deposit of $10 from me. It’s a small, almost embarrassing amount to type (when I think of charitable giving, I’m thinking of impressive amounts with more than two zero’s to the left of the decimal point), but the important thing to keep in mind is a.) it’s my initial amount that I expect to grow over time as my circumstances allow, and b.) the total for the year will actually be higher than what I would normally have given.
I’ve been growing more intentional over time with my charitable giving. Many moons ago, I was involved with a program created by the Kitchener Waterloo Community Foundation called Engage. The program has since ended, but the experiences have stuck with me. If I want to live in a vibrant and thriving community, it’s important that I take the benefits and privileges I’ve accumulated to help others in different living circumstances than my own.
In philosophy, there is a thought experiment called the veil of ignorance, where if I were to be placed randomly in a society, I would obviously want to choose a position that afforded me a degree of wealth, freedom, security, and privilege. To me, this translates into a moral imperative that we should actively work to raise the living situations for all persons in our community to promote flourishing and happiness. I don’t want to live in a world where people have to rely on charity, but it’s an inescapable reality and therefore it must be confronted.
If we are being technical, charitable giving breaks down into three kinds of support, known as the three “t’s” – time, talent, and treasure. Time and talent were my first introduction to giving back to my community. It started in my various youth groups, where I would exchange my time to support a cause: raising money for Beavers/Cubs/Scouts/Army Cadets/swim club, marching in Remembrance Day parades, highway cleanups, and building a library abroad. Later, when I was but a poor student, I volunteered my talents to support causes for school and to help fundraising efforts for the HopeSpring Cancer Support Centre (and eventually I became the minute-taker for their Board of Directors). I also supported my friends with their charitable causes, such as helping with my buddy’s Headshots from the Heart videogame marathon event. As I started to transition out of my student phase of life, I began exploring the third “t” – treasure.
My history of charitable monetary giving started in my mid-20’s. I created an elaborate birthday ritual for myself in an attempt to imbue the day with significance (after 21, there weren’t any milestones I cared to look forward to). One ritual I set for myself was to make a donation to a cause I was interested in. When I was a student of the Engage program, I reflected that I wanted my charitable giving to go to “feeding bellies and minds,” and so I would make a yearly donation to the local food bank. Despite having never used it myself, I recognize the value they bring.
My first donations were in physical goods. I would save up rewards points from the grocery store, then buy as much food as I could for a few hundred dollars, and bring all the canned goods in for donation. Then I found out that their purchasing power was much higher than mine, so I switched to monetary donations once a year on my birthday.
The next evolution in my charitable giving happened a few years back when I wanted to help support the preservation of our environment. The Bruce Trail is a massive network of linked trails that allows one to hike 900km from Niagara to Tobermory in Ontario. Despite having never hiked on the trail myself (though I have ambitions to take up the activity), this seemed like a good cause to support, so I started purchasing yearly memberships. This year, I switched from a buying a membership each year to an automatic renewal system.
Switching back to the Food Bank, my next evolution in giving started in January of this year. I emailed to follow up on the Christmas drive and to ask what kind of shortfall the KW Food Bank saw. They kindly shared their yearly report, but what stuck out was a throwaway comment that they were successful with the campaign, but that the regular commitments were more important to ensure meals throughout the year. So, I decided I would eventually switch to small monthly donations that would increase over time as my circumstances allowed.
It was accelerated this summer with the BLM protests. I wanted to do more than empty social media posts, so I started to think about how I could contribute financially to important causes. A close friend of mine has created a line in his budget for philanthropy, which I took some inspiration from.
But in the Canadian context, I thought I should find a way to support Indigenous causes. Truthfully, I haven’t yet made that commitment – I’m still on the lookout for an ongoing support cause that resonates with me. I value the input of my peers, so if you have any suggestions, I’d love to hear your input.
That brings us to today. I decided to finally set up my regular payments to support these organizations that do so much good in our community. While I don’t live in KW anymore, I still feel called to help them in their mission. And since I support KW, I thought it appropriate to also give money to support the same cause but for my neighbors. The $10 per month I’ve committed is indeed small, but over the year will amount to a higher giving than my one-off donations. Also, it’s important to note that these campaigns help to raise awareness (and it feels good to help feed people at Christmas), but the need is felt year-round. The reality is that these campaigns serve as a funnel to bring donors into the organization.
This isn’t to say that I will stop giving one-off donations. A lesson I took from Engage is that it’s ok to say no to charitable asks that come your way. You do it each time you decline to contribute a few dollars at the cash register when you check-out at the store. Rather than having to give to every cause, it’s important to determine how much you feel you can give, then to be selective with where you allocate your funds. During Charitable Tuesday today, I also made one off contributions to my alma mater’s Arts student fund because I value the time and experiences I collected when I was a student. I also made an additional donation to the Bruce Trail’s latest campaign to purchase and preserve additional land in the Niagara region for the trail. I doubt I’ll ever get out to see that portion of the trail, but it’s important to enable the organization to leverage its resources to improve access for everyone (include some of my friends who I saw posting to social media from the trail this summer!).
My birthday is coming up, and I plan to give another one-off donation to the Food Bank to keep with tradition. And in time, I’ll find new ways to offer support. There is no one right way to give, but regardless of the type and degree of your impact, there will always be needs that go unmet in our communities. In addition to my monetary donations, I still volunteer where time allows, such as on the two ethics boards I serve.
Both Stats Can and Imagine Canada are seeing that while average donation amounts are trending upwards, the average donation rate is holding-to-declining over time. I hope to do my part in reversing this trend.
Thank-you for reading my story, and perhaps it might inspire you to reflect on your giving history.
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.