"That's wrong- it's one of the most violating parts of this whole thing. It's like me walking in your bathroom while you in there with your pants down. It's the highest degree of disrespect." -Zakariyya (Zuh-CAR-ee-uh) pg 243, The Immortal Life of Henrietta Lacks
My college required "The Immortal Life of Henrietta Lacks" as summer reading. I've had a long history of stupid summer reading assignments (my last one, our professor said that he thought the book was trash). I'm still angry at my college for the wording of "What if Henrietta had been Henry?"- which I presume is supposed to be a cutesy way of saying "What if Henrietta had been assigned male at birth instead of female" (while also saying "It's completely unacceptable for an assigned-female to go by 'Henry', no matter what that person's gender", even though 'Henri' can be a nickname for Henrietta). So, I was not looking forward to it.
It was actually really good, I'd suggest it to everyone. One thing I adore is that the [white] author has done a good job at presenting the issue of race in a way that doesn't get white people's hackles up at being "attacked" by having their privilege pointed out. I now cringe to think of how absolutely stupid the white people in my 11th grade (~16/17 y.o) class were about the book we had to read- but I have to admit that opening a book by redefining 'racist' as "A white person who doesn't actively fight white privilege" (although, not in those words) and calling the Lion King racist because the black actors didn't sound black enough was not a great way to introduce white people to their privilege. And, of course, this is NOT a problem on the author's part. It's a problem on the part of the school who decided that a 301 level book was an acceptable way to introduce white people to the concept of white privilege- when most of us have grown up hearing people gripe about "reverse racism" and how affirmative action "just hurts white people".
One issue throughout the entire book, aside from race and class, is consent- namely, whether or not consent is required for doctors to take and test and sell our tissues (or inject us with cancer- that's cool, right? No reason anyone would say "no" to that). The doctors throughout the entire book represent the side of "First against the wall when the revolution comes"- crying that letting patients decide what happens to their own bodies would halt medical progress because they'll hold out for more money (while scientists halt medical progress by holding out for more money ...on tissue that isn't theirs). When you consider that one of the people who was allowed to decide what happens to his tissues actually reached out to a scientist who might be able to find a vaccine for Hepatitis B and offered free access to his tissues- it seems like that's unlikely. Most people want to find a cure for their disease, they want to prevent others from suffering the same thing they did, they think about how much they wish there had been a vaccine before and hope to spare others their pain. Some of the people holding out for money do so because THEY NEED THE MONEY TO SURVIVE. (don't forget that some of these diseases can make it impossible to hold a real job and can require extremely expensive treatments) And those who are happy not getting a cure should have the right to say "Screw you, I don't want any studies done". You are allowed to be selfish when it comes to your own body. It would be nice if you aren't- but you aren't required to. We aren't even forced to be organ donors after death- why would we require living people to allow their body to be used in ways they don't want it to? Some people argue that the tissue samples have been "discarded" and you don't have a right to your trash- but I'd say that death is a pretty big way of discarding your entire body, yet people aren't allowed to take it and do whatever they want to it without consent. And this applies to tissue samples taken by a doctor (that, at least in the past, the doctor didn't even have to tell you were being taken)- that isn't someone throwing a chunk of tissues away like "discarded" implies. That's allowing tissues being taken for a specific reason.
And I have to wonder what would have happened had the patient been asked and said "no". I imagine people would be scandalized- imagine if a patient walked up to a judge and said "I specifically said no and the doctor did it anyways". Would the dialogue be the same as in the current case where the patient isn't even told. Yet it's fine to do it so long as "Well, zie didn't say no".
A blog that I love to link to is Yes Means Yes, which is named because it supports affirmative consent. In other words- "It doesn't matter if zie didn't say no. Zie didn't say yes". People in favor of this also push it further- advising check-ins and allowing people to retract consent later. Now this is primarily about sex and sexual relationships- but so what? Sex is not the only place that consent matters, and I'm honestly disgusted that such things aren't common sense when it comes to medical and scientific practice.
Informed consent is just as important in medical practice- if not more. There's a clear power dynamic that cannot be changed easily unless the doctor agrees to try to change it. The doctor can even put the patient in positions where the patient has limited or no power to physically fight back through anesthetic, other drugs, etc. The patient must trust the doctor enough to believe that zir boundaries will be respected, that saying "no" will be heard and listened to, that the doctor genuinely has zir best interests at heart, and that the doctor won't misrepresent things. There's also the problem that, when a doctor violates a patient, we refuse to believe it was really a violation because the doctor was "just doing zir job". And this isn't just a problem of the 50s. We aren't older and wiser now- and while there are plenty of good doctors, the system is designed to make the patients an extremely vulnerable population- and doctors aren't always willing to try and communicate on even ground with the patient about whats going on in and with zir own body. (and don't forget other intersections- not everyone has the access to education or resources that cost money, or time to self-educate about their medical treatment and expect the doctor, whose job it is to educate zirself about medical treatment, will tell them anything they need to know)
I can't help but wonder if this problem would exist if our cultural dialogue about consent were different. If "no means no" weren't enough- because "yes is the only thing that means yes". If, culturally, it was so completely normal to ask for consent for normal things, like hugs or touching someone's hand, that no one ever thought about doing otherwise- rather than assuming that if you can do it before the person says no/in such a way that the person can't say no it's okay, would things like this still happen? If the idea that "If zie doesn't say yes, you can't do it" were more pervasive, maybe we wouldn't have had doctors and lawyers and partners and spouses and parents and strangers thinking that if they don't bother asking then it doesn't matter that they didn't get a 'yes'. If we're used to the idea that people have a right to decide what does and doesn't happen to their body, then it's harder to justify it when someone doesn't even have the chance to give informed consent. Which is the way things sbould be, because it matters- informed consent always matters. People have a right to decide what does and does not happen to zir body- no matter who's doing what to it.