The Immortal Life of Henrietta Lacks

Rebecca Skloot

2010


Part scientific history, part social history, this is as much a book about modern American social exclusion as it is about one of the most important scientific breakthroughs of all time.

The science is nowhere near as well-known as it should be. The cancerous cells of a dying African-American woman became "HeLa", the first "immortal" cell line, and at a stroke revolutionise the study of diseases. Using just one of Skloot's several examples, HeLa allowed proper rigorous comparisons of different treatment regimes for the polio vaccine. Since then, HeLa has been at the centre of almost every major medical trial and breakthrough, and is still a critical component of education and research fifty years later.

HeLa was given away for free to researchers in an act of enormous generosity – and also, it has to be said, because it happened in an era before the major profit motive invaded medicine. But that is of no comfort to the descendants of Henrietta Lacks, the cells' original "donor". Not only are there serious questions of consent and the ethics of openly sharing material that can be used to identify and profile the likely medical histories of her descendants; they remain so poor that they live in situations almost unrecognisable as the 20th century Western world, dependent on charity because of lack of health insurance. Indeed, Skloot's descriptions of "Lackstown", where everyone is related and sharing a common lack of basic services, healthcare, or employment, is the most riveting part of the book. In many ways it evokes some of the Victorian reportage – People of the Abyss, The, for example – but without any ambition to bring about similar social change. The Lacks' conditions are described, deplored, and in some sense accepted in a way that's quietly troubling.

The last section of the book is also fascinating, reviewing the continuing history of consent as applied to tissue samples where rights of privacy and ownership collide with research goals and the public good. Skloot does a good job in showing how inherently complicated these issues are, and doesn't fall into the trap of taking simple sides.

Finished on Tue, 18 Aug 2015 00:00:00 -0700.   Rating 4/5.