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Title: Who owns your DNA? Book raises thorny issue
Source:
msnbc
URL Source: http://www.msnbc.msn.com/id/35369461/ns/health-more_health_news/
Published: Feb 12, 2010
Author: Reuters
Post Date: 2010-02-13 14:11:41 by scrapper2
Keywords: DNA ownership, DNA=bio waste
Views: 151
Comments: 9
No one cares about the untold numbers of cells our bodies slough off every day. But imagine that someone got hold of your cells — and the DNA they contain — and used them to cure a disease, or somehow managed to make a lot of money off of them. Should you be proud? Could you claim royalties? In short, who owns your cells once they leave your body? That was never a question Henrietta Lacks had the chance to face. A poor African-American tobacco farmer born in 1920, Lacks is the subject of Rebecca Skloot's new book "The Immortal Life of Henrietta Lacks" (Crown, February 2010). The book, which hit the New York Times bestseller list this week, brings many of these thorny ethical issues out into the open where they belong, Skloot told Reuters Health during a live online discussion on February 11. (Click live.reuters.com/Event/Li...ssion_with_Rebecca_Skloot for a limited transcript.) "A lot of this story is about communicating science to the general public," she said. Lacks died in 1951 from cervical cancer, survived by her five children and her husband. She is also survived by some of her cervix: Without her knowledge, Lacks' doctor had removed a piece of her tumor for research purposes. The cancerous cells soon proved to be a hardy bunch, multiplying indefinitely as long as they had access to a few nutrients. Unheard of at the time, the immortal cell line offered scientists an unlimited supply of raw material and a chance to keep experimenting on the same cells as long as they wanted. HeLa cells sent to space For the next half-century, Henrietta Lacks' cells, dubbed HeLa by researchers, left lasting marks on science: They provided a cheap and easy way to test the polio vaccine, for instance, and helped develop the techniques that later made Dolly the cloned sheep a reality. They even went to space so that scientists could explore the effects of zero gravity on human tissue. The interest in Lacks' cells soon became more than just a noble quest for knowledge. For example, the company Microbiological Associates — which became a part of biotech giants Invitrogen and BioWhittaker — started out selling HeLa cells. Today, more than 17,000 US patents involve HeLa cells one way or another, according to Skloot's book, and HeLa is one of the most popular cell lines in the world. HeLa products now sell for as much as $10,000 per vial, Skloot writes. Yet until the 1970s, Lacks' family was completely unaware of the scientific and commercial triumphs of her DNA. In fact, some of Lacks' descendants don't even have health insurance, Skloot said yesterday. Today, since a 1990 California Supreme Court decision, cells are considered biological "waste" once they leave the body. Leukemia patient John Moore sued the physician who treated him and later helped develop a commercial cell line based on his cancer tissue. Although divided, the court found that Moore had lost the property rights to his cells after doctors removed them from him. By the same token, he had no rights to profit from any commercial application of the orphaned cells. Legal vs. ethical So far, that has settled the legal question. But "what is legal may not be the same as what is ethical," bioethicist Karen Maschke, of the Hastings Center, in Garrison, N.Y., said during the discussion with Skloot. The fact that the Lacks family never knew what scientists were doing with Henrietta's cells is critical. "People want to know," Maschke added. "Science has to be open and honest." As it is, Skloot said scientists fear logistical headaches if they start relinquishing control and giving out a lot of information to the general public. Patients may veto research projects involving their cells due to ethical qualms, for instance, or may demand revenues. Yet Lacks' children and grandchildren, on the other side of the equation, feel abandoned by the scientific community, which benefited enormously from the HeLa cells but left the family with nothing. Reading her book, Skloot said, has helped the Lacks family get a better sense of what happened to them. In the end, she believes, "it does good for science when everyone understands." Skloot has created a foundation - rebeccaskloot.com/book-sp...nrietta-lacks-foundation/ - to provide support for the Lacks as well as assistance to African Americans pursuing education in science or medicine.
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#1. To: scrapper2 (#0)
Owning DNA/RNA, life forms and all that crap is as obscene as anything else denigrating the value of life; such as abortion or capital punishment. I say that even if someone asks her or his DNA not be used for research reasons this should be respected. This is a real Pandora's box I wish Monsanto and other obscene, criminal entities had never opened. Although I suppose this controversy was an inevitable one.
Cells that are sluffed off naturally should be considered trash and no longer owned by you. A tumor removed with permission would be much the same. You are giving up rights to it. That said, the article says that the woman's cervics tissue was removed without her knowledge. That is theft and clearly different.
"With respect to the words general welfare, I have always regarded them as qualified by the detail of powers connected with them. To take them in a literal and unlimited sense would be a metamorphosis of the Constitution into a character which there is a host of proofs was not contemplated by its creators." But what if in the future it becomes possible to take 'trash cells,' reset the DNA and use if to create a clone of you to exploit physical or mental skills you naturally have; or even to interfer wwith your life or userp it, then what? Are these cells still not yours' if used thusly?
Individuals may not own a host of substances, natural and synthetic, without the government breathing down their necks. Corporation, on the other hand, can patent and own an individual's blueprint and do God-knows-what with it. Seeing what they do with their interests in viral life forms and the vaccines they try to force on us scares the bejesus out of me. We've got to bring these boys up on a short leash.
The short leash would be a good start, removing the dog's testicles would be nice to see too.
a. I'm conflicted about this issue. There was alot of scientific progress that came as a result of research done on Sklott's particularly resilient cancer cells...and profits to private companies, of course, but these private companies took the risk by investing $. Would the scientific research have taken place if the Skloot Family had taken ownership of her cancer cells at the time of Skloot's surgery? No. They probably would have dumped her cells in the nearest toilet. Let's be honest. The lack of informed consent issue has come up only because the Skloot family members [ and their lawyers] want a cut of the profits now that they see the value of Rebecca's particular cancer cells. If companies had lost their shirts investing research $ on Rebecca's cancer cells, I would bet we would not hear a peep from the Skloot Family members today. From the rebecca Skloot website: rebeccaskloot.com/the-immortal-life/ ...If you could pile all HeLa cells ever grown onto a scale, they’d weigh more than 50 million metric tons—as much as a hundred Empire State Buildings. HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the effects of the atom bomb; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions.... b. Otoh, I am uncomfortable that researchers used living Skloot Family members' cells, after they recognized the uniqueness of Rebecca's cancerous cells, without informing those family members about the possible monetary value of their own cells. ...Henrietta’s family did not learn of her “immortality” until more than twenty years after her death, when scientists investigating HeLa began using her husband and children in research without informed consent...
The morality of that goes beyond ownership of cells.
"With respect to the words general welfare, I have always regarded them as qualified by the detail of powers connected with them. To take them in a literal and unlimited sense would be a metamorphosis of the Constitution into a character which there is a host of proofs was not contemplated by its creators." And what is the difference between this and say a family finding a previously unknown manuscript, a copy of which had been stolen and used to make millions in Hollywood movies? No one knew until they were cleaning out the attic. Is the family now in it for the money? Yes but so what? Yes it is possible that research would have been set back had the cells not been stolen but that doesn't make it right. That is an "ends justify the means" argument often used by the left.
"With respect to the words general welfare, I have always regarded them as qualified by the detail of powers connected with them. To take them in a literal and unlimited sense would be a metamorphosis of the Constitution into a character which there is a host of proofs was not contemplated by its creators." The manuscript was created by an individual's intellect and is copyrightable material. The individual's heirs inherit the work and can demand royalties. Henrietta Lacks' cancerous cells were DNA mutations that were removed from her body in a teaching hospital environment. She chose to go to Johns Hopkins for her treatment for her cancer because she had no insurance. Teaching hospitals are research oriented. They give medical treatment pro bono but patients , in turn, permit them to use their cases for academic research purposes. Btw, Johns Hopkins earned zero $ from Henrietta's cancerous cells. Furthermore, Henrietta did not create a unique body of work. Biological waste is not an intellectual product nor are there property rights once the bio waste is removed from a body.
Ric O’Barry -- Earth Island Institute
#2. To: scrapper2 (#0)
James Madison, Letter to James Robertson, April 20, 1831
#3. To: farmfriend (#2)
Ric O’Barry -- Earth Island Institute
#4. To: Ferret Mike (#1)
#5. To: randge (#4)
Ric O’Barry -- Earth Island Institute
#6. To: farmfriend, randge, Ferret Mike, All (#0)
#7. To: Ferret Mike (#3)
But what if in the future it becomes possible to take 'trash cells,' reset the DNA and use if to create a clone of you to exploit physical or mental skills you naturally have; or even to interfer wwith your life or userp it, then what?
James Madison, Letter to James Robertson, April 20, 1831
#8. To: scrapper2 (#6)
(Edited)
James Madison, Letter to James Robertson, April 20, 1831
#9. To: farmfriend (#8)
And what is the difference between this and say a family finding a previously unknown manuscript, a copy of which had been stolen and used to make millions in Hollywood movies?
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