Much of the recent commentary on Henrietta Lacks and her eponymous cell line strikes me as muddling up informed consent with sentimental notions about cells.
Giving informed consent is an authorization for a doctor to do something dangerous to one’s person. From what I understand, HeLa cells arose from a biopsy that was taken without the Ms Lacks’ consent, informed or otherwise. This is certainly unethical. But what is informed consent?
Any medical procedure has risks. For example, the instruments needed to take the biopsy might be contaminated, they might introduce an infection that could even be lethal. In exchange for the risks, there is supposed to be some benefit. Typically, the biopsy will allow a better diagnosis and treatment. Suppose the specific biopsy in question leaves contamination behind in less than 1/30,000 cases, and that the tests to be run on the sample are all but certain to elicit better treatment; conversely, the biopsy could be quite dangerous and its usefulness in diagnoses close to nil. Weigh up the pros and cons and consent, or not.
Whether the consent process was valid (or if you will “ethical”) depends entirely on whether there was reliable communication between doctor and patient and whether the patient could grasp the relevant concepts and probabilities. All of this is nowadays standard and unexceptionable. And I expect it was true in Ms Lacks’ day too and the failure of the Doctors to obtain her informed consent for the biopsy is deplorable.
“Informed consent” relates to the risks and benefits to the patient of the procedure. What happens after the tests are run? A piece of the patient’s body remains lying around the lab. It might be disposed of properly, but what if the Doc makes a few microscope slides from the tissue to show their kid the beauty of the human liver? Or what if the doc feeds it to the pathology lab’s pet goat? A patient might be appalled by these things, as might a bystander. These feelings of outrage have led to demands that a patient must give “informed consent” to anything that happens to tissue after it leaves their body.
(Image is from http://www.microscopyu.com/staticgallery/dicphasecontrast/helapc.html)
I disagree. After the biopsy tests have been run and the results obtained, the medical procedure is over, and that ends the story as far as the patient is concerned. Whether the biopsy sample is incinerated, fed to a goat, or used in a research experiment has no consequence to the patient’s health and therefore there is no reason to give the patient any say over those eventualities. There is no mystical rope linking excised liver to the original body. After cells leave your body, they are gone, you no longer care for and feed them. You have to let go. The trillions of HeLa cells living in incubators around the world are not Henrietta Lacks. That she was treated deplorably by the medical profession appears to be undeniable. That she had any rights to, or responsibility over, the cells having left her body is sentimental.