Herietta Lacks: The NIH finally makes good

"Over the past six decades, huge medical advances have sprung from the cells of Henrietta Lacks, a poor, African-American mother of five who died in 1951 of cervical cancer. But Lacks never agreed that the cells from a biopsy before her death taken could be used for research. For years, her own family had no idea that her cells were still alive in petri dishes in scientists' labs. They eventually learned they had fueled a line called HeLa cells, which have generated billions of dollars, but they didn't realize until this spring that her genome had been sequenced and made public for anyone to see. "

More......
http://www.nbcnews.com/health/nih-finally-makes-good-henrietta-lacks-family-its-about-time-6C10867941

Melissa (PB) wrote:

"Over the past six decades, huge medical advances have sprung from the cells of Henrietta Lacks, a poor, African-American mother of five who died in 1951 of cervical cancer. But Lacks never agreed that the cells from a biopsy before her death taken could be used for research. For years, her own family had no idea that her cells were still alive in petri dishes in scientists' labs. They eventually learned they had fueled a line called HeLa cells, which have generated billions of dollars, but they didn't realize until this spring that her genome had been sequenced and made public for anyone to see. "

More......
http://www.nbcnews.com/health/nih-finally-makes-good-henrietta-lacks-family-its-about-time-6C10867941

Not to disparage the great significance of the science, while they may have "made good," in my opinion they could have done better considering the circumstances. It says a lot about the family of this woman that they asked for no financial compensation, but because her cells were taken for research without her knowledge or consent it seems that some compensation might be in order here...

What do you think?

Riceme, I totally agree. That was the one aspect of this that made no sense to me. The family deserves compensation.

I just listened to Michael Crichton's book Next and it goes into extreme detail about the legalities of tissue ownership and genetics. In the fictional book, the man who had the tissue removed was being treated for cancer and he was cured. The courts ruled that his medical waste was not his property. The court was concerned that biomedical research would be severely limited if excised tissue couldn't be examined and used for research.

Of course, the book was fiction.

I just read the article linked in the first post and believe it better reflects on real life than Crichton's book.

Crichton wrote the book in an effort to warn us of the dangers of genetic research and gene patenting.  It does contain some rather implausible scenarios.

But one scenario parallels the concerns of the Lacks family. In the book, genetic testing revealed that a person carried the gene for a certain kind of cancer. His son's medical insurance was canceled because he has a "preexisting" condition... the gene for the cancer.

Melissa (PB) wrote:

Riceme, I totally agree. That was the one aspect of this that made no sense to me. The family deserves compensation.

I think this is a very rare case... not one to set any sort of precedence. What they did way back when was wrong, and they should have corrected it while they were in the mood to make things right.