Rebecca Skloot’s presentation, centered largely around her book, The Immortal Life of Henrietta Lacks, focused primarily on the ethics of modern scientific progress. Ms. Skloot wrote her book about Henrietta Lacks. Ms. Lacks’ cells were taken without permission and were then grown in a laboratory and sold. Her genes, though she did not know it at the time, helped science unlock gene mapping and some medical breakthroughs.

The ethics of the matter, however, are clearly quite murky. When understood from different perspectives, one can come to quite different conclusions regarding the ethical questions The Immortal Life of Henrietta Lacks highlights. The primary concern of the family, and the mistreated patient, was their lack of awareness and consent. Most certainly, from Ms. Lacks perspective, she was undoubtedly wronged – as our social norms and rule of law both clearly state that informed consent are prerequisites for this kind of an ordeal. From a virtue and perhaps a deontological perspective, the scientists acted unethically. From a utilitarian point of view, however, one may be tempted to weigh the tremendous good the scientists did through the cultivation and study of her cells, against the personal discomfort felt by a few. In weighing these results, one can conclude that the scientists, on a larger scale, made an ethical decision in taking what they needed, as taking her cells did not cause any direct harm to Ms. Lacks. Thus, inevitably, this situation leads us to a larger question. To what extent do we value progress and innovation over the individual and his or her feelings? So far as I can tell, the world we enjoy today was built upon the backs of individuals and while that may not always be the most enjoyable prospect, I believe the civilized world is worth the progress it took to get here. While I can empathize with Ms. Lacks’ feeling that she was taken advantage of, I would hope that I might still look to the good my minor discomfort might have done.

The idea of cultivating cells is interesting, but the really cool stuff is the Human Genome Project, started in 1990 and finished in 2003. The goal was to map the sequence of chemical base pairs which make up DNA and map the roughly 20,000 to 25,000 genes of the human genome. The scientific, medical and intellectual possibilities are close to endless with this project. The Human Genome is quite literally the human blueprint! And it’s research was done internationally, building cooperation and positive interactions between different people with different values and cultures. This is an example of how the progress in science can truly affect the world system and all its people.

8 responses »

  1. laf024 says:

    It’s interesting how you compared the three different schools. I agree that according to utilitarians, the doctors acted ethically. More people will benefit from their actions than were harmed. Your question- “To what extent do we value progress and innovation over the individual and his or her feelings? “- I think we greatly over-value progress and innovation. I mentioned in a previous comment that society’s mindset is centered around advancement and innovation. If the majority of our society wants things to change ethically, environmentally, etc., this mindset has to change. Because I think you’re right, we do value progress over individual feelings.

  2. Charles says:

    I found this to be a very compelling read, particularly the dilemma between what we value most progress or individuals feelings. I think that this specific situation is hard because all we really want is a simple heads up on what is going on and what they plan to do with our body. We just want to be valued enough or have the freedom to say no. No one wants to feel like someone has stole something of value from them. With that being said do the benefits outweigh the cost? Yes I think they do. There is no question about that, but does that make it right? No. Its like taking a smarts person’s intellectual property and giving it to the world all for the sake of progress. Yes we may all benefit from it but that does not make it right.

  3. mbc014 says:

    I was unable to attend the talk, so I don’t know the full story; however, I have a vested interest in scientific ethics. I like how you compared the three schools, but I wonder if virtue ethics or deontologists would really argue this was unethical? Like I said, I don’t know the full story, but it sounds like me all they didn’t do was ask her permission? I mean, I highly doubt that if some leading doctors and researchers asked if they could take a small sample of her cells before she died she would object. What does that involve, a blood sample? And look at what has happened since then. I am not really convinced this is dishonesty at all; in fact, I would argue that a follower of virtue ethics would make the point that the doctors acted on an impulse before the opportunity was gone, and did nothing maliciously; the most virtuous member of the scientific community is the one who tries his hardest to help humanity in good conscience, without violating any major laws. And would a deontologist really argue that the greatest truth in this instance is obtaining consent? Just a thought.

  4. wmw014 says:

    I agree with you that it is absolutely amazing how far science has come. However, I think that one of the points that Ms. Skloot’s interview stressed was that not only do we need to recognize how far science has come, but we also need to acknowledge the people who’s expense this progress has come at. With that said, much of what we know medically has been the result of experiments and studies that were devoid of ethics and values. However, at the same time, we can’t deny that these breakthroughs in medical science have played an integral role in defining our current era. Thus, we must celebrate these discoveries through asking more questions and praising the people who, although not always voluntarily, contributed to our greater understanding of medical science.

  5. Loukas T says:

    I am curious as to why her cells were so important? Were her cancer cells different than other cancer cells, and would taking someone else’s be able to be “immoralized” as hers were? Also was there pain experienced due to the doctors taking the cells? Depending on the answers to these questions I tend to agree with mbc014 that this was a part of the doctors’ jobs. I fully believe that cells should not be taken without consent, but wasn’t consent implied because she was being treated for the cancer and the doctors would remove some to run tests on? I apologize for all the questions.

  6. ajc028 says:

    I wrote about a similar idea in my own blog post about Rebecca Skloot’s talk, especially the idea in the value a scientific breakthrough can bring to a society versus the harm it can cause an individual. I ended up coming to a very similar conclusion. What I found particularly interesting about her discussion, however, is how there are several examples where the ethical discussion continues long after the experiment has taken place. Often times, we think of hindsight on ethical issues to be 20/20, but Rebecca Skloot brought up several examples where this is not the case. For example, the STD studies conducted on African American men and the Nazi studies. In both of these cases, the experiments were completely unethical, creating the aftermath ethical dilemma on whether or not we should use the information the studies gathered.

  7. Jordi says:

    Should we allow the patenting of a cell? Of a genome? That is one of the current bio-ethics debates I find fascinating.

    If Lacks could have patented her own cancer cells, her family might have made millions of dollars.

    In the book, but not the talk, Skloot documents how Dr. George Day (I think), the scientist who along with his collaborator wife, Mary Day, would basically give the cells to any scientist who asked. They traveled by car, boat, and airplane all over world, at times in the pocket of a helpful pilot or stewardess to keep them warm.

    It was like a pre-internet open-source project and many of the breakthroughs her cells enabled depended on this open exchange of material.

    Patenting and other IP laws, while they allow some to extract value from knowledge, also limit the open access of society to critical knowledge or resources.

  8. […] Post that created the most Buzz: The Ethics of Progress: a difference in perspective […]

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