Immortal Life of Henrietta Lacks – Rebecca Skloot

Summary:

This is a non-fiction journalistic investigation into the life of Henrietta Lacks.

Henrietta was an average African-American woman, struggling to make ends meet in 1950’s America, raising a large family (five children) while living on the edge of poverty. What made her life exceptional was her death, or rather the reason for her death.

Henrietta suffered a particularly aggressive form of cervical cancer, and a few months before she died some cells were cut from her cervix. She was being seen at Johns Hopkins hospital in Baltimore. This was in racially-segregated America, and the author either states or implies that African-Americans were consistently treated worse than the white patients (citing things like the Tuskagee studies, for example).

HeLa cells, as they came to be known, were unlike any seen before or since, as they seemed to be “immortal” i.e. would reproduce and grow in the lab, stronger and longer than any other human cells. Geneticist George Gey was primarily responsible for the isolation of her cells, and then freely gave samples to any lab that wanted them (free as in accepted no payment, took out no patents, etc).

The problem was, the Lacks family say there was never informed consent, and this has led to years of bitterness and anger. Hela cells were (and are) the go-to cells for all kinds of testing. Through them, the world has benefited from a polio vaccine, IVF treatments, amongst myriad other breakthroughs. The cells have been in space, to see how they react to the environment. Her cells have travelled the world, and were used by countless labs. The Lacks have never received any payment/compensation, and until recently believed Gey had made a fortune from their mother.

The author details her investigative journey, the difficulty in getting the Lacks family to open up to her (they had been exploited many times in the past, particularly by a predatory “lawyer”), her perilous financing of the project through credit cards & loans, and her relationship with the oldest daughter Deborah.

What I Liked:

  • Unvarnished approach to this terrible story of ignorance, abuse, and exploitation.
  • The sub-text that this is still going on – illicit organ-harvesting for example is big business – and again the poor and ill-informed are the victims. [We have had our own scandals here in Ireland coming to light recently).
  • Well structured and a compelling read.

What I Didn’t like:

  • I don’t think it is as even-handed as the author states. Naturally there is huge sympathy for how the lives of the children worked out, but that was due to the loss of a strong mother figure, rather than being exploited per se by the hospital and, later, pharma companies. To conflate the two seems wrong. I also didn’t need the lurid and tragic personal details, and failed to see how they related to the cells theme.
  • The author was just as aggressive and invasive as any other, coming across as very pushy and almost harrying the family into becoming sources for the book.
  • The author agreed to tell the story verbatim as the Lacks gave it, in order for it to be published. There would be concerns about objectivity and perspective here as well.

Overall:

I really got into the science end of things, and am thankful for Henrietta – even though she knew nothing about it, she has saved millions of lives. It is a story that needs to be told. Overall, a good read, but could have done without the (irrelevant to the main story) human interest angles.

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