If you had read the link to the Nature article —which you somehow seem to believe is unreliable because I posted the link, you would learn that there are many ethical issues that arose after the cell lines were developed and after medycal ethics regarding informed consent and patient privacy had become the norm as well as the law. Two of those issues include identifying the source of the HeLa cell lines by using Mrs. Lacks name and by publishing her entire genome, again, without permission from any member of the family and again, violating the privacy of this woman, which was not only not cool but against standard medical practice and ethics and actually against HIPPA laws and regulations.
Every person should be horrified at such egregious violations.
But that's not 1951.
There have been substantial ethical violations in the time since, but that doesn't establish any deviation from the norm back then. Nor does it establish that her status had anything to do with what happened since. It's not always racism!
I cannot think of any other reason that some find it so objectionable that her surviving family members have been awarded damages for the grave harm done in violating her rights to privacy—and her family’s except racism.
I find it wrong because why should her case be any different than all the others from back then? The proliferation of her cells wasn't known at the time.
Yes, the conduct was wrong--but it was the accepted norm. When the norm is wrong you change it, you don't punish those who followed it in the past.
1. It was not unusual to not inform patients that tissues removed during a treatment might be used for research.
2. That has changed now. We cannot go back in time and right wrongs but when we know something was wrong, we can admit to it and make whatever redress is possible and useful.
3. Not all of those wrongs, and one might argue, not the most egregious wrongs were committed in 1951. HIPPA became law in 1996. The genome of Henrietta Lacks was published in 2013 and identified as hers, without seeking it receiving permission from any of her family. This is a violation not only of Mrs. Lacks, but also her family and descendants.
4. As loathe as you are to read links, I hope you will consider the following link which discusses some of the issues involving not only Mrs. Lacks’ tissues but the tissues from
other patios later used to develop tests and treatments.: https://www.science.org/content/article/what-does-historic-settlement-won-henrietta-lacks-s-family-mean-others#:~:text=In%20the%20Lacks%20case%2C%20the,the%20day%2C”%20Andrews%20says.
Up thread there is an article from Nature magazine that I posted. I know you consider yourself to be somewhat informed about science so I hope you will recognize both Science and Nature as being extremely well regarded publications of scientific papers abd discussions relating to research and ethics, among other things.
The case of Mrs. Lacks is simply the most widely known example, and one that has gotten a lot of recent publicity.
It genuinely is puzzling to me why anyone can object to a family receiving compensation for the violation of their rights and the rights of their family members, particularly when millions of dollars has been made from the contribution, however unwitting.
It is really hard not to believe that the objections have to do with the fact that this most famous/infamous case involved a poor black woman who died very young from her illness and whose contributions have saved countless lives. Why is that so disturbing?
