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.

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