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New Book Examines Tissue Donor Credit, Payment
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Before Henrietta Lacks died of cervical cancer 60 years ago, she donated tissue used to start a line of cells that have since helped scientists make advances in cancer treatment and other diseases.
The Baltimore County woman's family didn't learn about the cells for decades, and even though discoveries made with them have been worth millions, her family never received anything.
Now, in addition to medical advances, Lacks' cells and those of millions of other patients that have been used in research are prompting discussion of what recognition and compensation is due to people whose cells are used in research.
Federal informed-consent regulations now make it unethical for samples to be taken exclusively for research without permission, said Ruth R. Faden, director of the Johns Hopkins Berman Institute of Bioethics.
"If we're looking at the story of Henrietta Lacks and her family, we can say with confidence that what they experienced would not happen again," Faden said. "What remains unresolved are the still very big questions about what level of consent and whether and under what circumstances is compensation appropriate. These are all big open questions. There has been big movement forward in the bioethical questions raised from that case, but that's a long way from saying we've got this figured out."
Tissues can still sometimes be used for research without a patient's knowledge.
Hundreds of millions of samples are collected in the United States alone, said Dr. David Wendler, a staff scientist at the National Institutes of Health Clinical Center and a bioethics expert.
While some institutions give patients consent forms many don't, said Rebecca Skloot, author of "The Immortal Life of Henrietta Lacks."
Federal regulations regarding patient consent apply only to federally funded research and there aren't clear laws requiring informed consent for tissues that are stored, Skloot said.
Whether scientists must tell people if their tissues might be used for profit is also not clear, she said.
"There is a lot of argument over this," said Skloot.
Arthur Caplan, chairman of the department of medical ethics at the University of Pennsylvania, said most are unaware of the issue.
"If you go to the hospital, they take out your appendix, they give you a form saying we are removing these tissues, we may use this for research, is that OK with you? And do you renounce any claims to any commercial discoveries we may make?" Caplan said.
"Ninety-nine percent of people sign that form without a second thought -- they probably don't read it. Most people don't really care what happens to their appendix afterward. You're sick, you're trying to get treatment, you're not trying to get into a commercialization fight with your prostate cancer doctor."
However, parents in Texas and Minnesota parents sued their states arguing mandatory blood samples taken from infants are stored for research purposes without their permission. Texas settled in December and is poised to throw away samples from 5 million babies.
"This could have a really big effect on science if it's found in many states that you can't do research on fetal samples without consent," Skloot said.
Wendler said he thinks many researchers are open to giving subjects credit, but they're not sure how.
"They wouldn't object if someone in bioethics could come up with a mechanism that's feasible," Wendler said. "I don't think it's that they don't want their subjects to get any credit or any money. It's trying to figure out how to do that."
(© 2010 The Associated Press. All Rights Reserved. This material may not be published, broadcast, rewritten, or redistributed.)
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