Why I don’t just you with my data* *and I don’t think anybody else should either Photo: Drew, “Trust,” https://www.flickr.com/photos/drewbiedoo/414021488/ CC-BY, cropped Hi there, and thanks for inviting me. I understand that John Wilbanks was instrumental in getting me invited, so thanks, John, and the rest of you—if I upset you today, blame me, not John. I sometimes get invited to pontificate or pundit or play futurist games. I’m not a huge fan of that, honestly. I prefer talking in personal, not to say INDIVIDUAL, terms to trying to depersonalize what I know to the extent that pundits have to. So I won’t pontificate about Big Data in Biomedical Research today. That’s too big for me. I can’t do it. What I CAN do is try to explain why I, as an individual human being, don’t just trust all y’all with my data, and why I’m not sure anybody else should either.

Photo: anneheathen, “Team Librarian bunting,” https://www.flickr.com/photos/annethelibrarian/5972028418/ CC-BY, cropped For those who don’t know me already, I’m a librarian and I’m totally Team Librarian. Rah rah librarians! What I actually do these days is train people to join Team Librarian, and also Team Archivist and Team Web Manager and Team Records Manager and Team Research Data Steward and Team Digitizer and Team Cybersecurity and, you know, lots of related teams having to do with information management in some form or other.

Photo: Sean MacEntee, “privacy,” https://www.flickr.com/photos/smemon/4592915995/ CC-BY And if you just assumed that because I’m a librarian this next slide would be about privacy, good job! You have a future as a futurist! But now I’m going to mess with you, because privacy, vital as it absolutely is, is not really the direction I’m going today.

Photo: Drew, “Trust,” https://www.flickr.com/photos/drewbiedoo/414021488/ CC-BY, cropped Instead of the word “privacy,” I want to come back to this word, “trust.” Trust is exactly what any researcher, any of you here, it’s what you’re pretty much demanding of the human beings whose innards you are trying to learn about. Trust is exactly what any clinician needs from the people under treatment, without trust that whole thing just doesn’t work. So, you know, a clinical trial announcement is basically a giant JUST TRUST ME sign.

Photo: Tim Green, “Memory,” https://www.flickr.com/photos/atoach/3075699326/ CC-BY, cropped I also want to bring in this word, “memory,” because like it or not, a lot of distrust is built on true rememberings, and a lot of trust boils down to trust in either not knowing something in the first place, or in the act of forgetting. And humans are good at forgetting! This can be such a mercy sometimes! Computers? Computers are both much better at forgetting than humans—and, sometimes, much worse. And wow, does that ever have implications for trust.

Story: Misha Angrist, “Do You Belong To You?” http://genomemag.com/do-you-belong-to-you/ Fair use asserted. So here’s one of the things we’re supposed to be trusting in, right? Right from the mouth of a law professor who specializes in science law and big-data law, Dr. Jorge Contreras of the University of Utah. He’s on the Scientific Advisory Board of the Utah Genome Project, among plenty of other high-profile work in science data policy. Heck, he might even be here today. If he is, hi, Dr. Contreras! So Dr. Contreras says everyone benefits from medical research.

Yeah, I think Dr. Contreras is wrong on that one. Anybody just looking at me, got any guesses why I might think that? (If somebody brings up my gender: “Yeah, that’s one thing, sure. Research has not been fair to women, like, in the history of ever! What else?”)

Photo: Andrew Girdwood, “Adipose,” https://www.flickr.com/photos/wyrdo/5650328303/ CC-BY Well, okay, you probably do have a guess, but it’s considered kind of rude to say it out loud, so I’ll cut the awkward and say it for you. I’m fat. I’m a fat woman. And I’m in the middle of figuring out how to change my primary care provider because the new resident I was just assigned to just canNOT with fat people. Ew, icky, fat people, I might be contagious or something, me and my ew-icky fatness! And where did she get this idea that I’m going to drop dead from fat tomorrow and take half the world with me? Research. From biomedical research, of course. Sure, you can argue, and I DO argue, that this doctor and a hell of a lot of those researchers are marinating in motivated reasoning and confirmation bias—fat people are ew icky so OH LOOK, all this research saying fat people are ew icky and on the point of death!—but even so, obesity research arguably ain’t helped me OR my doctor here. Obesity research gives my doctor a socially-ironclad excuse to look at me as a collection of adipose tissue instead of a human being and concern-troll me incessantly. How this is supposed to improve my health outcomes, given that I now do not trust this doctor as far as she could throw me, is a really good question to which I do not have any kind of answer. But look, who am I to challenge the idea that research helps everybody? I’m not a law professor. I’m not a scientist. I’m not a doctor. I’m just some random librarian.

Photo: Daniel X. O’Neil, “1910 Census for 2000 Block of St. Paul” https://www.flickr.com/photos/juggernautco/6063339595/ CC-BY, cropped So, as I said I’m a librarian, and I earned my way through library school working on a grant-funded project transcribing early 20th-century census records from microfilm—speaking of memory tools—into a computer for programmable analysis. The principal investigator for this grant was a demographer, a population scientist. And the census records we were transcribing were specifically limited to the island of Puerto Rico. So, let’s see who’s paying attention: Why would a demographer be interested in the Puerto Rican population of the early-to-mid 20th century, and what does that have to do with biomedical research?

Photo: Juan Cristobal Argueta, “Graffiti”https://www.flickr.com/photos/28312366@N08/14960339281/ CC-BY (if nobody got it) Here’s a hint in the form of some seriously great Puerto Rican street art. Jog anybody’s memory? (if nobody STILL gets it) Wow. I’m disappointed. This is Research Ethics 101 stuff. (if somebody got it) Good memory you have there! I’m curious, how did you know about this? Puerto Rico is interesting to demographers because it was Ground Zero for the early-to-mid twentieth-century eugenics movement that originated among wealthy white people in the United States, and was directed largely at poor people, people with disabilities, people of color, and the intersections among those groups. This movement took several different forms, but what’s relevant to us here today talking about digital biomedicine is the widespread, decades-long ABUSE of Puerto Rican women as human subjects for research into birth control, particularly though not exclusively birth-control pills and surgical sterilization techniques.

I am not expert enough to talk extensively about this ethical horror, so instead I’ll recommend a couple of excellent books about it. Iris López’s book Matters of Choice is matter-of-fact and utterly devastating reading. Lourdes Lugo-Ortiz, in Tropiezos con la memoria, does a ton of work picking apart the Puerto Rican press discourse of the time around eugenics and female sterilization.

So. Two super-important figures in that white-run eugenics movement in Puerto Rico were—okay, another pop quiz, who recognizes either of these people? (Margaret Sanger, Clarence “Proctor and” Gamble) So Sanger, she was a racist, classist, ableist eugenicist. I’m not gonna soften that! She honestly, deeply believed that there needed to be fewer people in general, especially if they were poor, and fewer people with DISABILITIES and people of COLOR in particular. So she rustled up research funding for testing the birth control pill in Puerto Rico from rich white society friends of hers. As for Gamble, he was a PIECE OF WORK. Lemme lay it out for you here, just SOME of the stuff this guy did in Puerto Rico: * He tested contraceptives in Puerto Rico that had not been FDA-approved in the United States. * He sold contraceptive spermacides that he pretty much knew to be ineffective, and not only that, he did his best to corner the Puerto Rican market with his lousy spermicides, preventing more effective diaphragms from being sold there. This sent some Puerto Rican women to permanent surgical sterilization who would have preferred temporary birth control. * He and the pharmaceutical company Searle purposefully chose poor women from a housing project in Rio Piedras to test on. Some of them ended up in a nearby hospital with severe side effects. What did our boy Clarence do about that? He shrugged and kept testing. Piece. Of. Work. Both of them, really. But hey, research helps everybody, right? Dr. Contreras said so! Yeah. Well. Some people remember differently, and our memories are NOT WRONG.

Photo: Hey Paul Studios, “Uterus Art,” https://www.flickr.com/photos/hey__paul/5870794493/ CC-BY Photo: Nate Grigg, “Not 100% Effective,” https://www.flickr.com/photos/nateone/2713580189/ CC-BY So where am I as an individual in all this? I’m not Puerto Rican myself, as far as I know. (I don’t trust 23 and Me either.) Spending eight hours a day for a couple of years transcribing people’s census records does spark a certain amount of interest in their lives, sure, but I hope that’s benign? Here’s the connection. Well, several connections. *CLICK* First, I have in the course of my life relied on Planned Parenthood, which Margaret Sanger founded, for reproductive health care. *CLICK* Second, I spent a few years taking birth control pills to control my fertility. *CLICK* Third, when I decided I absolutely did not want to bear children, I had La Operación myself—I had a tubal ligation, which went fine and has done its job. So I benefited directly from what Sanger and Gamble did in Puerto Rico. I am complicit. Y’ALL MADE ME COMPLICIT. Y’all’s research enterprise MADE ME COMPLICIT in harm done to and systematic dehumanization of Puerto Rican women. And I am NOT OKAY WITH THAT. I don’t even know how to frame it to myself, how do I even begin to pay back my personal individual debt to those women? So yeah. Coming face-to-face with this set of memories makes me face my forced complicity in your industry’s shameful, disgusting, EVIL actions. And that has a lot to do with why I don’t trust you with my data. Giving you my data amounts to letting you make me complicit in whatever you do with it. And I don’t want to be complicit in any more racism, any more ableism, any more dehumanization.

Photo: Martin Cooper, “IRB,” https://www.flickr.com/photos/m-a-r-t-i-n/15766212458/, CC-BY But that was then, this is now, right? Now there are IRBs and meetings just like this and people who invite librarians to speak at them and stuff like that, right? So there’s no problem any more, right? And I should just trust all y’all with my data, right? Okay, no. No, I shouldn’t and no, I don’t. And I think what Sanger and Gamble did in Puerto Rico has a lot of parallels with things that y’all in this very room are doing, or wanting to do, with the data of people like me—whether that’s fat people, or cis female people, or middle-aged people, however you want to carve that. And there’s stuff that’s going on that Sanger and Gamble couldn’t even have imagined, of course, and I want to talk about that too. And computers offer y’all the increased ability to remember exactly what you learn from me and about me, which makes the issues here even scarier to me. You know, there are worse ways to figure out the ethics of something than to ask yourselves “What would Sanger and Gamble have done with this?” and if it’s something they would have leapt upon with glad cries to further their racism and ableism, MAYBE DON’T DO IT. I’m just saying. But it starts with the basic uncomfortable awareness that the research you do could do harm, to me, to someone like me, to someone maybe completely UNLIKE me. And that is exactly what Dr. Contreras conspicuously did not acknowledge with his “research helps everybody” nonsense.

Photo: Barney Moss, “Yes,” https://www.flickr.com/photos/barneymoss/15469103940/, CC-BY, cropped Now, here’s a thing that supposedly blows up my whole argument about contraceptive research in Puerto Rico: there was in fact some kind of consent process for a lot of the research, and the women said yes. There was a consent process for most of the surgical sterilization that went on, and the women said yes. And these yeses were recorded in writing, as yeses, without a whole lot of context around them. She said yes, that’s enough. They said yes. They consented. There is a record, a written memory, of their consent. So Sanger and Gamble are off the hook, right? Right? If any of you truly think that, seriously, please, turn in your Ph.D and never work in research again, because you cannot be trusted by any person of sense. No, they are not off the hook! Off the hook for targeting poor women of color? Off the hook for putting women in the hospital and not CARING? Come on. But here’s the thing: those women DID consent. Let’s look at why, and what their consent means for the whole idea that consent gets researchers off the hook.

Let’s look at Sanger and Gamble again, just for a moment. Sharp-dressed, aren’t they? That looks like silk on Sanger. And Gamble’s wearing a nice suit and tie and glasses, classic symbols of high-class smartitude. I’m saying, these people had a LOT more social power—visible social power and authority—than the women Gamble was testing on. And yeah, this mattered. Here’s another story: one of Sanger’s first attempts to arrange a test of the pill in Puerto Rico failed. Why? Because the women she tried to recruit were educated, figured out what was going on, and refused participation. So yeah, we know what Sanger and Gamble and their cronies did then—targeted poorer and less educated women. Pieces of WORK. We have records of consent, as memories about the research being done. Those records are in no way contextualized as to power relationships. Who’s twisting whose arm to sign that piece of paper? The piece of paper can’t tell you that. Only human memory and social awareness can. And look, has anything changed? You, all of you in this room, have a lot more social power than I do. You walk into a room and say you’re a doctor, you’re a biomedical researcher, you’re an entrepreneur, folks are like, wow, you must be really smart, you must know all the things and have all the degrees and do all the amazing stuff. Which is a fair bit of social power, am I right? Me, I walk into a room and say I’m a librarian and people are all like “wait, you people still exist?! *pause* Oh, cool, I’ve always wanted to shush a librarian! Shhhhhhhhhh!” Y’all, that one actually happened; I remember it well. It was the president of Macalester College in his welcome message to a library-technology conference I was at. It was SUCH a jerk move! He NEVER would have pulled something like that in this room, and that is all about social power and how y’all have it and I do not.

Photo: Mike Lawrence/CreditDebitPro.com, “Contract Key,” https://www.flickr.com/photos/157270154@N05/38466671226/ CC-BY, cropped Another thing that current IRB infrastructure assumes and in fact ENFORCES is the idea of consent to research as a purely personal, purely individual choice, choice in a vacuum. And the memory system around IRBs, consent forms and such, that reflects consent as purely individual, as contractual. And I say “contractual” because I want to invoke law here—United States law is adamant that a contract is a contract is a contract as long as the contractors are cognizant adults. Doesn’t matter if the contract is evil, doesn’t matter if the contract’s wording is a hot mess such that you’d need to be Notorious R-B-G herself to understand it, it just doesn’t matter. You signed a consent form, you’re on the hook. Oh, and whether you can revoke your consent to a research study depends not on you, but on what the researchers built into their consent form. Awesome. So returning to Puerto Rico, you can see how consent was basically a figleaf for Sanger and Gamble’s racist and sexist abuse of Puerto Rican women. Each individual woman, okay, she signed something—but it’s the AGGREGATE of women to whom a giant, horrible injustice was done. And our research consent and memory infrastructures can’t really allow for that or capture that right now, much less prevent it. One more time—I’m trusting y’all with my health data why exactly? When there’s a long history of research abusing women, research harming fat people?

Photo: Wufoo Team, “Checkboxes,” https://www.flickr.com/photos/wufoo/399053845/, CC-BY purple! Another assumption the consent process makes is that this personal, individual choice is unconstrained, that it’s free. This is— how shall I put this?—garbage. Your consent form says I can choose red, blue, green *click* what if I want purple? Or purple is best for me? Of course our situations constrain our choices and our ability to consent, and of course those constraints fall into patterns by ethnicity and gender and education and wealth and age. Why is a Rio Piedras woman going to consent to a birth-control pill trial that’ll send her to the hospital? Because her other realistic choices, if we assume she wants SOME kind of birth control—and that, too, is an assumption that warrants unpacking, I just don’t have time for it here, read Iris López—her realistic choices are unwanted childbearing, permanent surgical sterilization, or Clarence Gamble’s crappy spermicides! In situations like that, a consent form is a mockery. It ignores incredibly exploitative research practices.