I am a theoretical physicist and currently Director of 
June 13, 2011
Who should own the rights to one's tissues?
People generally do not think about what happens to the blood and tissue samples they give as part of medical tests, assuming that they are eventually discarded in some way. Many are not aware that your samples may be retained for research or even commercial purposes. Once you give it away, you lose all rights to what is subsequently done with it, even if your body parts have some unique property that can be used to make drugs and other things that can be marketed commercially.
The most famous case of this is Henrietta Lacks, a poor black woman in Baltimore who died from cervical cancer in 1951. A researcher who had been trying unsuccessfully, like others, to have cells reproduce in the test tube, received a sample of hers too. It turned out that her cancer cells, unlike other cells, could reproduce endlessly in test tubes, providing a rich and inexhaustible source of cells for research and treatment. Her cells, called HeLa, have taken on a life of their own and have travelled the world long after she died. Her story is recounted in the book The Immortal Life of Henrietta Lacks by Rebecca Skloot.
The issue of whether one's cells should be used without one's permission and whether one should be able to retain the rights to one's tissues is a tricky one for law and ethics.
"Science is not the highest value in society," [Lori Andrews, director of the Institute for Science, Law, and Technology at the Illinois Institute of Technology] says, pointing instead to things like autonomy and personal freedom. "Think about it," she says. "I decide who gets my money after I die. It wouldn't harm me if I died and you gave all my money to someone else. But there is something psychologically beneficial to me as a living person to know I can give my money to whoever I want. No one can say, 'She shouldn't be allowed to do that with her money because that might not be most beneficial to society.' But replace the word money in that sentence with tissue, and you've got precisely the logic many people use against giving donors control over their tissues." (Skloot, p. 321)
It does seem wrong somehow for private companies to hugely profit from the lives and bodies of others without owing them anything. In the case of Henrietta Lacks, her family remained very poor and lacked health insurance and proper medical care even while her cells became famous and they bitterly resented this. They did not even know about the widespread use of her cells until two decades later.
On the other hand, it would put a real crimp on research if scientists had to keep track of whose tissues they were working on. Since we all benefit (or should benefit) from the results of scientific research, one can make the case that the tissues we give up are like the trash we throw away, things for which we have voluntarily given away our rights. If the tissues are used for medical research done by public institutions like the NIH or universities and the results are used not for profit but to benefit the general public, this would, I believe, remove many of the objections to the unaccredited use of tissues.
You can see why scientists would prefer to have the free use of tissues but what I don't understand are those scientists who go overboard in making special exceptions for religion.
David Korn, vice president for research at Harvard University says: "I think people are morally obligated to allow their bits and pieces to be used to advance knowledge to help others. Since everybody benefits, everybody can accept the small risks of having their tissue scraps used in research. "The only exception he would make is for people whose religious belief prohibit tissue donation. "If somebody says being buried without all their pieces will condemn them to wandering forever because they can't get salvation, that's legitimate, and people should respect it," Korn says. (Skloot, p. 321)
This is another case where religions try to claim special privileges denied to everyone else. Why is that particular claim legitimate? Why should religious superstitions get priority over other irrational beliefs? Our bodies are in a constant state of flux. It sheds cells all the time in the normal course of our daily lives, which is why DNA testing has become such a valuable forensic tool for solving crimes. Since we are losing old cells and gaining new cells all the time, it is a safe bet that hardly any of the cells that were part of me as a child are still in my body. So the whole idea that the afterlife consists of 'all of me' is absurd since that would require bringing together all the cells that I have shed during my life, resulting in me having multiple organs and limbs, like some horror fiction monster.
Rather than pandering to this fantasy, we should educate people that our bodies are in a constant state of flux, that our seemingly permanent bodies are actually transient entitites.
Comments
I thought it was odd that when I had my wisdom teeth pulled the dentist said I couldn't keep one as a souvenir. He said it was because they were considered 'medical waste.' Not sure how true that is.
"Since we are losing old cells and gaining new cells all the time, it is a safe bet that hardly any of the cells that were part of me as a child are still in my body."
This idea is new to me but, I do believe that donating diseased tissue/organs can help in furthering research. My aunt recently passed of cancer and we donated tissue to research at her last request.
For a long and healthy life, my goal now is to reduce oxidative stress on the cells of the body through preventative care and prayer.
Another great post Mano. I read the book and enjoyed it thoroughly, as it brings to the public eye a lot of very important ethical situations the medical community faces now, and will continue to face as technology advances and allows us to do more with less. One distinction I think needs to be made clear however, is that patients really only give up their rights to organs/tissue in a CLINICAL setting, i.e., I have a wart on my foot I want removed, so I go to the doctor to have it removed. What's done with that tissue/those cells is out of my control now. I *asked* for the tissue to be removed. However, in a RESEARCH setting, participants most certainly do maintain rights to organs/tissues that were garnered for research purposes. If *you* ask *me* to volunteer my wart for research purposes and I oblige, you may not then use those garnered HPV cells to profit from without my specific consent (consent usually mandated to be approved by an institutional review board). Many times a participant will volunteer for a research study that actually contains a clinical component/benefit, and vice versa, and those situations are really where the dilemma is not so clear cut.
Interesting topic, I hope you share more of your opinions on this with us Mano!
I think the line should be drawn precisely where research ends and commercial exploitation begins. If profits are coming in, compensation to the source of the samples should be going out.
@Matthew
Informed consents can (and often are) worded in a way that allows the tissues to be stored (frozen) and used in the future to answer additional and/or new research questions.
Many informed consents are 10+ pages and take at least 30 minutes to fully explain to the participant. Often times they either zone out or just sign without completely reviewing the consent.
Agreed. I work researching the cognitive effects of HIV infection, and our consent forms are most definitely just as you described. However, the point I was trying to make was that absent that very confusing, 10 page consent form that the participant did or did not read in its entirety, signed in full by the participant, nothing can be done with the collected material.
To wit, no such consent (confusing/long/boring or not) is needed in a clinical setting.
religion always demands special consideration, nothing new or surprising there.
but it is difficult to judge the actions of the past with the current days's ethical frameworks
Henry,
It used to be the case that the teeth of poor people used to be used to replace the lost teeth of rich people, thoughI don't think your wisdom teeth was used for that!
Matthew,
Thanks for pointing out that important distinction between the clinical and research setting. I had not been aware of it.
I agree with Steve and I'm uncomfortable for profits to be made without any redistribution to the donor’s family. If it is for pure research purposes that will indeed help the human race then that sits more comfortably with me. However, it's a fine line because once research provides a cure a market and profit for the cure will be an inevitable consequence. Let’s not start on the profits and influence of the major drug companies!
Mano,
You raise some valid and very interesting points. I definitely agree that educating the public regarding the flux our bodies are in will help relax some of the fears or concerns of those individuals who are reluctant to donate their organs and tissue. However, this will not completely resolve the issue. This is especially true of those who strongly believe it violates their religious beliefs. Science and religion have been at war for a very long time and will continue to be until both parties can agree that religion and science are not mutually exclusive. I think when individuals recognize that a supreme being is responsible for our creation including the universe we live in and also recognize that this supreme being's power defines the laws of science which governs this earth, they will not be so quick to turn away from scientific research.
Those donor's rights need to be kept in mind. But there will always be a struggle with what is morally right for people to do versus what's profitable. I guess it comes down to doing what's right versus what's easy.
I agree with @Durham. It is confusing to me how an individual's tissues may be used to profit, yet that individual may be unaware of the profiteering/ not be entitled to anything. This is a great comment thread, everyone. Very nicely discussed.