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News articles (here and here) in the last week or so have claimed that Henrietta Lacks’ family has finally gained something from the use of her cells.

It isn’t enough.6493208

I know some MillersTime readers are familiar with the story of Henrietta Lacks because many of you cited Rebecca Skloot’s wonderful book The Immortal Life of Henrietta Lacks* as one of your favorite reads a couple of years ago.

From NBC News: “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.”

A week ago, NIH announced it had reached agreement with the Lacks family, according to NBC: “Under a new agreement, Lack’s genome data will be accessible only to those who apply for and are granted permission. And two representatives of the Lacks family will serve on the NIH group responsible for reviewing biomedical researchers’ applications for controlled access to HeLa cells. Additionally, any researcher who uses that data will be asked to include an acknowledgement to the Lacks family in their publications.”

OK.  A first step? Some scientific recognition?

But many careers, scientific advancements and untold numbers of dollars have been made because of the use of the cells taken from Henrietta Lacks’ cervix. Neither she nor her family knew about this for years nor has anyone in the Lacks’ family received financial recompense.

Pardon me, but I don’t think nor agree, as the NBC article and others are saying, that “that failure has now been fixed.”

(*Rebecca Skloots, at least, has tried to make amends. With some of the profits from her book, she established the Henrietta Lacks Foundation, which, according to their website, “strives to provide financial assistance to needy individuals who have made important contributions to scientific research without personally benefiting from those contributions, particularly those used in research without their knowledge or consent. The Foundation gives those who have benefited from those contributions — including scientists, universities, corporations, and the general public — a way to show their appreciation to such research subjects and their families {my emphasis}”)