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The Immortal Life of Henrietta Lacks (HeLa) 01/04/2011

Posted by Shirley Hallam in Ethics.
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Henrietta Lacks was a black woman from Virginia who died in 1951 of cervical cancer at the age of 31.  A tissue sample of her tumour was taken and cultured in the laboratory of Johns Hopkins Hospital, where it became the original source of the immortal HeLa cell line. 

In “The Immortal Life of Henrietta Lacks”, science writer Rebecca Skloot has painstakingly researched both Henrietta’s life and the scientific discoveries arising from the development of the first immortal cell line.  Written without sentiment or sensationalism, the contrasts are stark: a multimillion dollar industry based on research at the frontiers of the scientific understanding of pathology and genetics, originating from a poor black tobacco farmer, whose family have remained in relative poverty.

The book raises important questions of ethics in research, informed consent, and ownership of samples and genetic code.  Although these topics are familiar territory, I found that reading the book made me consider them afresh, from the perspective of both research subject and scientist.  There are no easy answers, and just as HeLa cells continue to multiply, the story doesn’t have a neat ending.  But it is a timely reminder of the importance of communication and engagement between scientists and the public; and in this Rebecca Skloot is a great role model.