Feb 182010
 
In 1951, Henrietta Lacks died of an incredibly fast-growing and invasive uterine cancer. She is still alive today, making vital contributions to our understanding of cancer and cellular biology. How a dead, uneducated black woman continues to live and provide valuable scientific insights, and why her children and grandchildren have not benefited from her legacy, is the subject of Rebecca Skloot’s new book, The Immortal Life of Henrietta Lacks (which you can buy from Amazon here).

Henrietta Lacks’ tumor gave rise to the HeLa cell line, the first cells that could be grown indefinitely in culture. Ordinarily, cells isolated from a living creature divide only a few times in culture and then die out, a consequence of telomere loss. The cells isolated from Mrs. Lacks’ tumor, however, had an active telomerase enzyme and were very robust, besides. They grew happily in culture then, and continue to be cultured in labs around the world to this day. Various obfuscations, some intentional and some not, have hidden the originator of the cells behind pseudonyms such as “Helen Lane” (the name I first learned). Scientists weren’t the only ones who didn’t know where HeLa came from, though.

The Immortal Life of Henrietta Lacks is about science, but it is not so much about the science. We learn that Mrs. Lacks’ cells contributed to many significant advances, but the book provides little detail as to how. Skloot focuses instead on the Lacks family and the small set of scientists and doctors surrounding her case. She traces Mrs. Lacks’ brief trajectory in life, from Clover, Virginia to Turner Station, Maryland, and then the sad history of her children, who endured poverty and various kinds of abuse. Neither they, nor Henrietta’s husband Day, knew of the cells or their importance until the ’70s, even though scientists took blood from them in an effort to stem HeLa’s invasion of other cell lines.

Skloot also provides some context on the use of human tissue by scientists, a practice which in Lacks’ day did not even require consent, much less “informed” consent. Although the researchers who initially coaxed HeLa to grow in culture gave the cells away for free, the mass production of HeLa has grown into a major industry. The cells themselves, and specialized products derived from them, are routinely sold as reagents at high prices, with no benefit to Henrietta’s descendants.

Skloot describes some similar cases for context, including the case of the Mo cell line, in which a man was subjected to procedures that had little purpose beyond improving a cell line from which he received no benefit, then denied a stake in the resulting commerce by the Supreme Court of California. As our capacity to reap massive quantities of data from tiny amounts of biological material increases, the question of who owns tissue samples and whether patients are due compensation if those samples prove scientifically useful will become ever more relevant. Striking a balance between the rights of the patient and the need for vital research is a question that should be confronted, but the history Skloot recounts suggests that governments would rather ignore the problem than reach a probably unpopular conclusion.

Regardless of the direction bioethics laws take, the genie has firmly escaped the bottle in HeLa’s case. It’s unlikely that the Lacks family will ever directly benefit from the industry that has grown up around the last remains of their matriarch. Maybe that’s a crime, and maybe it’s just bad luck. Either way, if you are one of the many who has benefited from Mrs. Lacks’ involuntary contribution to medical science, you may wish to give back via the Henrietta Lacks Foundation set up by Skloot to provide scholarships and health care for the Lacks family.

  One Response to “What price eternity?”

  1. I just found out about this book the other day. I'm definitely going to check it out. Who knows how many kilos of HeLa cells I've grown over the years…

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