Usually Tuesday/Thursday posts are reserved for either a post from me or a post from Alex. However, this week, because our book this week presents a little bit of a hot topic, I have decided to express my opinion and invited Alex onto my day of the week to do the same.
In our book this week, The Immortal Life of Henrietta Lacks, there's a lot of controversy surrounding whether the Lacks family should have gotten a cut of the money, the rights they had in terms of their mother's cells and, inevitably, the rights one has to their own tissue and cells. As of the time the book was published (2009), you didn't have rights to your own tissue once they left your body. They're considered waste and can be used for anything. What's more, you don't have to be told what they're being used for. Your cells could be used to find better ways to abort a baby or build a bomb, and you would never know. (Ok, I'm using extremes here, but you get the general idea. To be fair, your cells could also be used to cure cancer or make people live forever, just so we have a balanced argument.)
Now, there are some conditions. If the doctor is taking your cells for something specific, like he wants your cells to use in a specific cancer study, he has to tell you. Or if the doctor knows that he's going to be using those cells to experiment on baby abortions or immortality, he is required, by law, to tell you. If you say no, he's not allowed to use them. But that's where your rights end as a human over your tissues (unless you happen to patent them... but that's a whole other can of worms that I'm not going to get into.)
So now that I've given you that background on your rights, how do I feel about it? Honestly, it's a weird subject. I mean, on the one hand I think everyone has that feeling of, "But they're MINE and you're using them without telling me." But really, people have probably been using my cells in genetic testing for all of my 26 years and I've never known. Every single baby in America (and probably many other countries) has blood taken for genetic testing on the day they're born. It's done for their own good to see if they're going to develop any genetic disorders when they're older. What do you think happens to that blood left over when they finish testing for genetic diseases? That's right; it gets put in a general pool of "This can be used for whatever we want." Every time you give blood, have a mole removed, hell, donate your hair to things like Locks of Love. Your tissues get tested on. I have the basic theory that it's been happening all this time, why stop now? It hasn't done me any harm and it's done lots of people lots of good (or one could only assume.)
"But Cassy, what happens if they use your cells for BAD things?" How do I know that they already haven't? My blood is in a bank somewhere with a number on it (I've given blood three times in my life. What do you think they do with the six little vials of blood that they take to begin with?) No one really knows that it belongs to me. I don't don't even know that it belongs to me. So if it's used to test the effect nuclear bombs have on humans, I, nor the scientists who use that blood, will ever know it was mine. What's more, I never really gave my consent to have it used. I just donated my blood and for some reason, they couldn't use it in the blood bank (maybe my iron was too low that day.) And if I stop them from using my blood from the bomb testing, I also have to stop them from the cancer research testing.
This is a really complicated issue, obviously. Cassy put everything really well, and I mostly agree with her opinions. I don't care what my blood, or cells, or tissues are used for (as long as I'm done using them, of course).
A lot of horrific things have been done in the name of science, technology, medicine, and progress throughout history. You've probably heard of the Tuskegee syphilis experiments, and the many terrifying tests done on concentration camp prisoners during the Holocaust. These are just two notable examples, but things like this happened all the time before there were laws to prevent them.
But with Henrietta Lacks, we're talking about cells that were no longer attached to her, and therefore testing on them couldn't hurt her. Still, some people don't see their cells that way, and would object to any testing on those cells that they didn't know about or approve of beforehand.
Lucky for me, I don't mind if anyone tests my "abandoned" cells for things that might help humankind, so it's not a concern for me. But if it's a problem for you, you might want to have a very in-depth discussion with anyone who ever takes your blood or does any routine tests on you or extracts a tooth or cuts your hair (depending on how strongly you feel about it).
I absolutely loved this book and think it should be read and discussed in every intro to bio/chemistry/science class in high school/college.
ReplyDeleteGood blog entry!obvs, but remember, this might not have been happening to white patients in their separate ward in the hospital.
The word 'donated'is an overly nice way of putting it as it was common practice for medical staff to do testing on humans who were probably not white and not literate and not in a position to question the doctor/staff. This was exploitation plain and simple.
Your totally right about "donating" her cells (which, I think we talk about in our review this week. She never at any point really gave her consent.) And we don't really know what was going on with white patients. But, even today, black or white, you don't have the rights to your cells once they're detached from your body.
DeleteWhen Henrietta's cells were taken, they were stolen from her body. But that's not really what upsets me the most about her story. Ok, they took her cells. They've taken LOTS of people's cells without asking. What really makes me angry is how appallingly they treated her family because Hopkins didn't want them to ask for money or recognition or really anything. And, what's more, no one told the family what was going on and then they violated confidentiality, and then denied everything. Really, THAT'S what upsets me more than anything in this whole situation. I think that if Hopkins had just cooperated with the family, been honest with them, it could have been so much better.
But, like you said, they were a black family, in the 50s, uneducated, and really not in a position to question.