I was thrilled to see that this case study was assigned as I recently watched the trailer for a new HBO film about this exact case, The Immortal Life of Henrietta Lacks:
As a young scientist myself who has utilized cell culture techniques, I find this case so exciting. The ability to grow these immortal cell lines is essential in aiding advancements in biomedical research. As the case mentions, HeLa cells, the first immortal cell line from patient, Henrietta Lacks, aided the development of the polio vaccine and numerous Nobel prizes (Thomas, 2014). But, with every case there is a ethical dilemma. So, what’s the problem here?
Despite the amazing breakthroughs due to Henrietta Lacks’ cells, her family – a poor family with inadequate health care – never knew about the use of their mother’s cells until science journalist and author of The Immortal Life of Henrietta Lacks, informed them of their mother’s scientific contribution. As they were uninformed, they never directly benefited, financially or otherwise, from their mother’s cells. As Henrietta’s daughter points out, “If our mother’s cells done so much for medicine, how come her family can’t afford to see no doctors?” (Thomas, 2014).
Thomas raises a few key ethical questions at the end of the case. First, he asks if patient identities should be protected. The answer is a clear “yes” from me. While HeLa is “vague”, it was still specific enough to be traced back to the patient. As the Hayes Evidence blog explains, “Consider for a moment how you would feel if your complete genetic make-up was made available to anyone who wanted to look at it. That’s what happened earlier this year when the entire HeLa genome sequence was published in the journal G3: Genes, Genomes, Genetics and made available without restriction” (Hayes Evidence Blog, 2013). While some of us may think it would be cool to have our cells be “famous” (I personally do!), it is still a violation of patient privacy and could have unwanted implications for her surviving family members.
The second question raised in the case regards patient consent. At the time, Henrietta’s family was unaware of how her cells would be used. While there is no harm to the person directly if the cells are used for research, if family members are uninformed or have misconceptions about scientific research, their concerns should be addressed. However, if a patient’s cells – like Henrietta’s – see promise in research, I do not see a problem with using them as long as 1) there is no harm to the patient and 2) the patient’s privacy is protected as stated previously.
The third question is a little more conflicting. The authors ask if companies should be able to profit from cultured cells. Cultured cell lines are sold often as they are used in labs across the world. I do not see a problem with profiting from cells because in my mind, they are now more of scientific tool than a piece of a person. I think the larger problem here is that Henrietta’s family did not receive any recognition or benefit. As the New York Times explains, “It had never occurred to anyone to ask permission to take their mother’s tissue, tell them that her cells had changed scientific history or even to say thank you. And certainly no one had ever suggested that they deserved a share of the profits” (Grady, 2010). Because Henrietta never knowingly donated her cells, I think the family should have been informed and recognized for their mother’s gift to science.
The fourth and final question raised by Thomas asks if people should let their cells or tissues be used in scientific research. As a supporter of biomedical research, I say yes. However, I do think that the patient and/or the patient’s family should be informed of the potential uses of the cells. However, there are exceptions. Some people are opposed to certain types of research – perhaps due to religious beliefs – and would feel uncomfortable consenting to a donation. From the perspective of a scientist, the more cells the better! But, if we are going to respect patient autonomy, they should at the very least be informed and if they are strongly opposed, they should be allowed to make that choice.
In hindsight, I think it was right to take the cells from Henrietta Lacks. The benefits to society – supporting the principle of justice and the utilitarian point of view – outweigh individual harm. However, the WAY they took the cells from Henrietta was not favorable. Her family should have been informed and recognized for their mother’s contributions early on in the process. Eager to hear your thoughts!
Hayes. HeLa Cells, Patient Privacy, and Biomedical Research. Hayes Evidence Blog.
Thomas, J. (2014). Well & Good. Broadview Press.
Julia,
This is a very cool topic and I think it is relevant for a lot of us as I know many people here are involved in scientific research. Just like you, I was pretty excited that this was a topic that we were going to be able to discuss. I think it is a controversial topic all around, especially because using human cells as a viable research option is a relatively new development in the medical research field so there is not as much deep historical background when compared to other ethical issues. In response to the first question you address, I totally agree that a patient’s information must be projected. While in this case, protecting patient information did not turn out in the best way possible, it was still the right thing to do. Unfortunately, patient information projection is not a topic that can be a case by case basis, as it gets far too complicated in the world of medicine to keep up with, so we must just blanket the whole situation and protect any and all patient information.
Going along with patient consent, similar as above, this is a hard yes as well. No matter who you could possibly be helping, patient consent is a must. By using a person’s cells without their direct consent, you are essentially stealing from them as they have ownership of their body. This is just like in any case where bodily consent is necessary and the rules must be followed. As for profiting from cultured cells, I agree with you again that I don’t see much of a problem with it. While it seems to turn this whole situation into a profit driven purpose, the fact is that almost everything today is profit driven and this is no different. Selling cultured cell lines is basically just selling lab equipment as that is exactly what these cells will be used for. It doesn’t always seem right to everybody who isn’t directly involved in scientific research, but as far as I see it, it’s just another purchase of experiment material.
Addressing your final point, absolutely yes everyone should allow for their cells to be used for research. If we are doing research for human benefit, how much of a benefit is it if we’re using mouse cells and other animal cell lines to solve these problems? Yes, it is the next best thing, but it will never be the right thing. Many people are uncomfortable with the use of their cells for research, but it is for the greater good. I am a very strong supporter of your argument to these issues and I think that as people become more and more informed of the benefits of medical research, they will be too.
Works Cited:
Grady, D. (2010). Second Opinion – A Lasting Gift to Medicine That Wasn’t Really a Gift. New York Times.
Hayes. HeLa Cells, Patient Privacy, and Biomedical Research. Hayes Evidence Blog.
Thomas, J. (2014). Well & Good. Broadview Press.