Clinical agnosticism and when trials say “maybe”—a presentation for #SummerSchool hosted by scholar.social

On 2020 August 4, I gave a presentation on Clinical Agnosticism as a part of , a free, online, interdisciplinary academic conference hosted by scholar.social.

You can download the slides from my presentation here. I transcribed my presentation in the Notes for each slide (Click View > Notes), if you want to know what I said, too!

If you want more information on this subject, this research was based on my doctoral thesis, The Moral Efficiency of Clinical Trials in Anti-cancer Drug Development. Chapter 5 will be of particular relevance.

The risks and harms of 3rd party tech platforms in academia

CW: some strong language, description of abuse

Apologies for the rambly nature of this post. I wrote it in airports, partly out of frustration, and I may come back and make it more readable later.

In this post, I’m going to highlight some of the problems that come along with using 3rd party tech companies’ platforms on an institutional level in academia. Tech companies have agendas that are not always compatible with academia, and we have mostly ignored that. Briefly, the core problem with the use of these technologies, and entrenching them into academic life, is that it is an abdication of certain kinds of responsibility. We are giving up control over many of the structures that are necessary to participation in academic work and life, and the people we’re handing the keys to are often hostile to certain members of the academic community, and in a way that is often difficult to see.

I have included a short “too long; didn’t read” at the end of each section, and some potential alternatives.

Using a tech company’s services is risky

There’s an old saying: “There’s no such thing as the cloud; it’s just someone else’s computer.” And it’s true, with all the risks that come associated with using someone else’s computer. The usual response to this is something along the lines of “I don’t care, I have nothing to hide.” But even if that’s true, that isn’t the only reason someone might have for avoiding the use of 3rd party tech companies’ services.

For starters, sometimes tech companies fail on a major scale that could endanger entire projects. Do you remember in 2017 when a bug in Google Docs locked thousands of people out of their own files because they were flagged as a violation of the terms of use?

https://twitter.com/widdowquinn/status/925360317743460352

Or more recently, here’s an example of a guy who got his entire company banned by Google by accident, proving that you can lose everything because of someone else’s actions:

TIFU by getting google to ban our entire company while on the toilet

And of course, this gets worse for members of certain kinds of minorities. Google and Facebook for example, both have a real-names policy, which is hostile to people who are trans, and indigenous North Americans:

https://boingboing.net/2015/02/14/facebook-tells-native-american.html

There are other risks beyond just data loss—for example, if your research involves confidential data, you may even be overstepping the consent of your research subjects, and potentially violating the terms under which your institutional review board granted approval of your study by putting it on a 3rd party server where others can access it. This may also be the case of web apps that include Google Analytics.

tl;dr—If your academic work depends on a 3rd party tech company’s services, you risk: losing your work at a critical time for reasons that have nothing to do with your own conduct; violating research subject consent; and you may be excluding certain kinds of minorities.

Alternatives—In this section, I have mostly focused on data sharing risks. You can avoid using Google Docs and Dropbox by sharing files on a local computer through Syncthing, or by installing an encrypted Nextcloud on a server.

Tech companies’ agendas are often designed to encourage abuse against certain minorities

I have touched on this already a bit, but it deserves its own section. Tech companies have agendas and biases that do not affect everyone equally. For emphasis: technology is not neutral. It is always a product of the people who built it.

For example, I have been on Twitter since 2011. I have even written Twitter bots. I have been active tweeting for most of that time both personally and about my research. And because I am a queer academic, I have been the target of homophobic trolls nearly constantly.

I have received direct messages and public replies to my tweets in which I was told to kill myself, called a “fag,” and in which a user told me he hopes I get AIDS. Twitter also closed my account for a short period of time because someone reported me for using a “slur”—you see, I used the word “queer.” To describe myself. And for this, there was a short period of time in which I was locked out, and it took some negotiation with Twitter support, and the deletion of some of my tweets to get back on.

I was off Twitter for a number of months because of this and out of a reluctance to continue to provide free content to a website that’s run by a guy who periodically retweets content that is sympathetic to white supremacists:

Twitter CEO slammed for retweeting man who is pro-racial profiling

And this isn’t something that’s incidental to Twitter / Facebook that could be fixed. It is a part of their core business model, which is about maximising engagement. And the main way they do that is by keeping people angry and yelling at each other. These platforms exist to encourage abuse, and they are run by people who will never have to endure it. That’s their meal-ticket, so to speak. And most of that is directed at women, members of racial minorities and queer people.

I have been told that if I keep my Twitter account “professional” and avoid disclosing my sexuality that I wouldn’t have problems with abuse. I think the trolls would find me again if I did open a new account, but even if it were the case that I could go back into the closet, at least for professional purposes, there are four reasons why I wouldn’t want to:

  • My experience as a queer academic medical ethicist gives me a perspective that is relevant. I can see things that straight people miss, and I have standing to speak about those issues because of my personal experiences.
  • Younger queer people in academia shouldn’t have to wonder if they’re the only one in their discipline.
  • As a good friend of mine recently noted, it’s unfair to make me hide who I am, while all the straight men all have “professor, father and husband” or the like in their Twitter bio’s.
  • I shouldn’t have to carefully avoid any mention of my boyfriend or my identity in order to participate in academic discussions, on pain of receiving a barrage of abuse from online trolls.

I’m not saying that everyone who uses Twitter or Facebook is bad. But I am extremely uncomfortable about the institutional use of platforms like Google/Facebook/Twitter for academic communications. When universities, journals, academic departments, etc. use them, they are telling us all that this kind of abuse is the price of entry into academic discussions.

tl;dr—Using 3rd-party tech company platforms for academic communications, etc. excludes certain people or puts them in the way of harm, and this disproportionately affects women, members of racial minorities and queer people.

Alternatives—In this section, I have mostly focused on academic communications. For micro-blogging, there is Mastodon, for example (there are even instances for science communication and for academics generally). If you are an institution like an academic journal, a working RSS feed (or several, depending on your volume of publications) is better than a lively Twitter account.

Tech companies are not transparent in their decisions, which often cannot be appealed

Some of the problems with using 3rd party tech company platforms go beyond just the inherent risks in using someone else’s computer, or abuse by other users—in many cases, the use of their services is subject to the whims of their support personnel, who may make poor decisions out of carelessness, a discriminatory policy, or for entirely inscrutable or undisclosed reasons. And because these are private companies, there may be nothing that compels them to explain themselves, and no way to appeal such a decision, leaving anyone caught in a situation like this unable to participate in some aspect of academic life.

For example, in the late 00’s, I tried to make a purchase with Paypal and received an error message. I hadn’t used my account for years, and I thought it was just that my credit card needed to be updated. On visiting the Paypal website, I found that my account had been closed permanently. I assumed this was a mistake that could be resolved, so I contacted Paypal support. They informed me that I had somehow violated their terms of use, and that this decision could not be appealed under any circumstance. The best explanation for this situation that I could ever get from them was, to paraphrase, “You know what you did.”

This was baffling to me, as I hadn’t used Paypal in years and I had no idea what I could have possibly done. I tried making a new account with a new email address. When I connected my financial details to this account, it was also automatically closed. I’ve tried to make a new account a few times since, but never with success. As far as I can tell, there is no way for me to ever have a Paypal account again.

And that wasn’t a problem for me until a few months ago when I tried to register for some optional sessions at an academic conference that my department nominated me to attend. In order to confirm my place, I needed to pay a deposit, and the organizers only provided Paypal (not cash or credit card) as a payment option.

And this sort of thing is not unique to my situation either. Paypal has a long, terrible and well-documented history of arbitrarily closing accounts (and appropriating any money involved). This is usually in connexion with Paypal’s bizarre and sometimes contradictory policies around charities, but this also affects people involved in sex work (reminder: being a sex worker is perfectly legal in Canada).

Everything worked out for me in my particular situation at this conference, but it took work. After several emails, I was eventually able to convince them to make an exception and allow me to pay by cash on arrival, but I still had to go through the process of explaining to them why I have no Paypal account, why I could try making a new one, but it wouldn’t work, and that I wasn’t just being a technophobe or difficult to work with on purpose. I was tempted to just opt out of the sessions because I didn’t want to go through the embarrassment of explaining my situation.

And my problem with Paypal was a “respectable” one—it’s just some weird mistake that I’ve never been able to resolve with Paypal. Now imagine trying to navigate a barrier to academic participation like that if you were a person whose Paypal account was closed because you got caught using it for sex work. Do you think you’d even try to explain that to a conference organizer? Or would you just sit those sessions out?

tl;dr—When you use services provided by tech companies, you may be putting up barriers to entry for others that you are unaware of.

Alternatives—This section was about money, and there aren’t that many good solutions. Accept cash. And when someone asks for special accommodation, don’t ask them to justify it.

Conclusion

Technology isn’t neutral. It’s built by people, who have their own biases, agendas and blind-spots. If we really value academic freedom, and we want to encourage diversity in academic thought, we need to be very critical about the technology that we adopt at the institutional level.