…by emailing email@example.com
Disclaimer: exasperated sarcasm.
The decision to return to a college campus this fall is as full of decision-making as ever. Students must ask: Are fairy lights too cheesy? Do we have adequate enough health insurance to cover COVID-19 treatment? Should we bring our stuffed animals? How long will it take before we know someone who is so sick they can’t study?
If on-campus, will the dining hall food be good? Are we endangering hourly-wage staff members by returning? Good thing it’s easy for everyone to get home if campus closes! And good thing international and trans-national travel is so safe!
Alternatively, we could choose to study at home. Good thing high-speed internet is so accessible. Phew. Oh except that pesky statistic… What was it again? Right: Black, Latinx, and Indigenous students are the least likely to have access to high-speed internet and computers.
It feels as if our return to campus is for the financial betterment of our college… But that’s just me being paranoid! It’s because our administrators (who we are so personally close with!) really miss us, right?
I love having all these wonderful options!
Just kidding, I basically have one choice. Being on campus means I will have access to food and a bed, all for the price of my financial aid package. That package is a far better deal than what I’d get if I lived on my own and bought my own groceries. Plus, being on campus means I have access to my on-campus work-study jobs. There’s also the fact that being on-campus gives me access to consistent COVID-19 testing. Each of these factors becomes more complicated for students with identities caught up in interlocking systems of power.
The return to campus also brings a mess of consent forms. The forms are a nightmare of legal language. My school asked us to sign 4 separate waivers with similar names. It was difficult to keep track of. One of the forms invites me to agree to the following:
I acknowledge and agree that I am voluntarily assuming any and all risks (…) I may be exposed to the coronavirus and may become ill with COVID-19, and that (…) may result in personal injury, illness, temporary or permanent disability, or even death.Bates College Acknowledgement of Shared Responsibility
The word “voluntarily” implies that every student has the flexibility and financial latitude to study off-campus if they are uncomfortable returning. It implies that if we consent to these forms it is because we actually had a choice.
Signing my life away to my college felt awesome
Better yet, as I read through the “Testing Authorization” form which would allow my school to test me twice a week, I noticed this clause:
v. that your leftover specimen and/or information about you may be used without information that identifies you after the testing is over for analysis in collaboration with a public health authority.Bates College Testing Authorization
Whoopee! I get to sign away my bodily materials too! This is the last clause at the end of a fairly long document. Not unlike the digital consent forms for new apps, I imagine a lot of people didn’t entirely…
But what exactly could the testing company hired by my school (an expense which they used to justify the tuition hike in a year when many families are struggling financially) be doing with my leftover specimen?
I emailed the Dean in charge of addressing student concerns about the legal forms we had to sign to be on campus.
I would like to know why students have to sign away their rights to the specimen after the test has been completed and results have been processed. If this is not the College’s policy…I would like to know why the College is comfortable with singing away samples of student specimens to a company without a) explaining to us why they need our specimens or b) giving us the option to opt-out of this piece of the agreement
The Dean said not to worry, the company would not share my demographic information with any for-profit companies. He also reminded me that the testing company is affiliated with Harvard and MIT (insert my awe and gratitude at the utter prestige of these institutions).
The thing is, I didn’t ask about my demographic information. I asked why my physical sample would be signed away to a company in a different state, for uses unknown to me. So I asked again:
I am wondering what will happen to the leftover, physical samples from the tests after the tests have been processed.
The Dean told me that the Harvard-affiliated testing institute would use my leftover samples to improve their testing or exchange them with other labs. He implied that I should feel grateful to be a part of this fantastic effort to improve testing. Unsurprisingly, there’s a history of convincing college students that their participation in medical research is for their own good. Even better, according to an Oxford University Press study by Heather Prescott, colleges often invoke “patriotic duty” as an incentive for research participants. That’s right, I should be grateful because my used snot Q-tips will save America. Our issues with testing certainly have nothing to do with a nationwide lack of public health policy…
What kind of patriot would I be if I wasn’t willing to risk my life on campus and volunteer my genetic data for the good of all Americans!
Also, the Dean’s response is flat out dismissive. Students, myself included, do not have the science background to truly understand how our bio-data will be used for research. The Dean also told me Bates couldn’t change the testing agreement. According to him, if I remained uncomfortable signing the form, my best option would be to study remotely or take a leave of absence.
I went to the Broad Institute’s website to look for any more information about what they would use our samples for. Imagine my utter relief when I found that the contact email for Covid-19 testing-related questions was: firstname.lastname@example.org. Any worries I had about non-consensual DNA testing on my biological material disappeared at the sight of the word genomics!
This whole situation reeks of shady incentives flowing between colleges and testing companies. Imagine the discount my college received if they agreed to hand over our biological material: This way, the company gets free bio-data, and my school saves money. Not that that is a new concept. The US has a shameful history of profiting off of the extracted bodily materials of others. A prominent example of this is Henrietta Lacks.
Henrietta Lacks was a Black woman, who went to Johns Hopkins for cervical cancer treatment. During her hospital visit, her doctors took some of her cells and used them to develop the first human cell line. Now her cells, called HeLa cells, are the basis for countless drugs and vaccines, including for Polio, leukemia, and Parkinson’s disease.
Lacks never gave her doctor permission to use her cells for this purpose. Years passed before anyone compensated her family for her enormous contribution to medicine, and labs all over the country still use her cells today. Johns Hopkins and many others continue to profit from this non-consensual extraction.
There’s a word for the non-consensual extraction of bio-data for profit: biocapitalism
Scholar Jodi Melamed says: “capital can only be capital when it is accumulating and… it can only accumulate by producing and moving through relations of severe inequality among human groups.” It then follows that biocapitalism must also move through and reproduce these inequalities among human groups.
As an industry, biocapitalism has emerged from the practices of racial enslavement in the US. Enslaved Black women were economically valuable to their enslavers for their productive and reproductive potential (Read Jennifer Morgan’s Laboring Women). Enslavers engaged in extractive capitalism by forcing Black women to bear children they could also enslave. This “slave episteme,” according to Alys Weinbaum, has extended into the extractive biocapitalism that exploited Henrietta Lacks.
Biocapitalism: then and now
In her book “The Afterlife of Reproductive Slavery,” Alys Weinbaum asserts that “capitalist expansion requires disposable humans.” In many cases, this has meant that American biocapitalism exploited the lives and bodies of their Black citizens. From Henrietta Lacks to the Tuskeegee Syphilis Experiment, there are countless examples of non-consensual experimentation on Black Americans (Read H. Washington’s Medical Apartheid). American biocapitalism also exploits low-income, people of color overseas. We see this play out with impoverished women abroad who give up control of their lives and bodies for income to become surrogates for Americans (Weinbaum).
It is easy to see how this dynamic worked during enslavement, and nowadays in the realm of reproductive labor, both domestic and abroad. It becomes slightly more obscured when transferred to extractive scenarios like the one in my school’s testing “consent” form. I also want to be clear that harvesting student bio-data is merely an extension of Weinbaum’s “slave episteme.” There are capitalist industries, like the prison-industrial complex, which are inextricable from enslavement. Our consent form merely borrows the exploitative practices of biocapitalism.
The language of “gifts”
Weinbaum states that all biosciences, but especially the biotechnology industry and international pharmaceutical industries, rely on “voluntary” research participants to “donate” or “gift” raw bodily materials to clinical or pharmaceutical studies. These bodily materials become the basis for enormous profit for the powerful pharmaceutical industry. At the very least, many of these “volunteers” receive financial compensation or access to medications they wouldn’t otherwise. I get the profound privilege of being on a college campus with a shaky re-opening and public health plan. Oh, to be young and risking my life for a degree!
The possibility of consent disappears when labs obtain raw materials from individuals who are trapped in an imbalanced relation of power with them. Modern-day extractive biocapitalism almost always operates this way. It traps the people with uteruses who become surrogates out of economic desperation. It binds the estrogenic people who “donate” their eggs in order to make money. The low-income college students who have the best access to food, internet, and shelter while on campus, also become entangled in these dynamics.
Imbalanced relationships of power
Through their consent forms, colleges are reinforcing the imbalanced relationship of power between school and student. The lower the student’s income, the more imbalanced the relationship.
I have signed the testing “consent” form against my better judgment. Many other students have done the same. Twice a week for as long as we remain on campus, we will hand over bodily material to a company in a different state. Someone gets to profit from that, no matter how much my school assures me otherwise.
It is pitiful for my college to tell me that I should stay home if I feel uncomfortable singing this agreement. This oversimplified solution erases the economic, emotional, and other complexities of remaining home. What about the students who have to support their families with a job if they live at home? The students for whom the last six months have been excruciating while living in emotionally or physically abusive environments? Students for whom high-speed internet is not accessible? Remaining home isn’t a tenable choice. Swallowing the horrible pit in our stomach and handing over our bodily material is the better “option.”
Our school shouldn’t have put us in this position in the first place
I recently found out that a peer institution right down the road hired the same testing company, with one major difference. Their agreement explicitly prohibits the Broad Institute from performing DNA testing on student samples. Our agreement does not. I can’t help but think of Heather Prescott’s study again. She quotes a former researcher at a college as he reflected on the ethics of experimenting on students without true consent. He poetically summarizes the situation by saying:
It wasn’t that… we said “If we ask for consent we lose our subjects’, it was just that we were so ethically insensitive that it never occurred to us that you ought to level with the people that were in an experiment.Louis Lasagna, quoted in the Journal of the History of Medicine and Allied Sciences, Volume 57, Number
1, January 2002, pp. 3-38 (Article)
So is my school “just” ethically insensitive? Or are they motivated by financial incentives? I can’t tell which one is more nauseating.
Although I guess I shouldn’t worry. After all, my college will only share my demographic information with two state governments. Blessedly, Harvard and MIT will be “thoughtfully” overlooking my genetic materials. Oh, and best of all, should I have any questions at all, I can email email@example.com to soothe my worries. What an immense relief.
Patriarchy And Pandemics, A Disastrous Tale: COVID-19 Viewed Through A Gender Lens
Mental Health, Division One Volleyball, And COVID-19
Ethnical Sterilization: The Balance Between Informed Consent And Autonomy