Consent, money and the ethics of tissue research
Say you go to the hospital and have your appendix taken out. What do you think happens to that tissue when you leave? Often, the medical institution will keep it for further research. You may be asked to sign a consent form before the procedure, saying you approve of this. Or you might not. Let's say that you didn't sign a form and your appendix goes on to help a researcher discover an amazing medical advancement. Are you due any credit? Any of the profits?
It's unclear. Even experts in bioethics haven't sorted out these thorny issues. These big questions of consent and compensation are laid out by science writer Rebecca Skloot in the new book "The Immortal Life of Henrietta Lacks." (Here's a link to a review in The Sun)
Lacks was an African-American woman from Baltimore County who died of cervical cancer in 1951. But her cells live on in laboratories around the globe and helped spur medical advances from cancer treatments to the polio vaccine. During her treatment, Johns Hopkins researchers collected her cells without her permission. Even her family didn't know about the research and the success of the HeLa cells, as they are known, until decades later.
It's a fascinating story about race, class and medical ethics. And it sheds light on modern-day ethics of tissue research -- a complex, intriguing topic, but one that few people know anything about (I, for one, was in the dark about it until writing this story).
Lack's tale has lessons for us to learn from today, says Skloot, who is speaking at Hopkins tonight. "There are human beings behind every sample we rely on in science," she said.
Comments
Hopefully, if broadened public appreciation of this ongoing discussion
concerning ethical tissue research and
attendant donor compensation never
results in financial compensation.
Let's at least, locally, encourage Hopkins' to move toward more
significantly acknowledging both their
role in the Hela cell phenomena, and
their need to move Ms Lacks family
toward healing over this story.
Perhaps, Hopkins will consider naming
its soon to be relocated Berman Bioethics Institute into the developing
Hopkins' Biotech Park after Henrietta
Lacks?? Let's hear for a sincere public
legacy toward correcting sins of the
past. To be sure,. healing is a matter
of time, but more often a matter of
seizing the opportunity.
Posted by: nia redmond | February 23, 2010 4:15 AM