Chapter 3 Spotlight E: Privacy

Henrietta Lacks’ story is a cautionary example of the need to get consent and confidentiality right

As I write in Chapter 5 Fieldwork, medical research’s use of Henrietta Lacks’ cells without permission or acknowledgement, raises ethical questions about consent, anonymity and confidentiality – which apply equally to surveys.

If you’d like to learn more about Henrietta Lacks and ‘the HeLa’ cell strain, there’s a useful short summary of her story on the website of the John Hopkins Hospital that treated her. They acknowledge that her story has contributed to major changes in the way that they seek patient and family consent, and two family members now sit on the board for approving use of ‘HeLa’ cells: 

Honoring Henrietta: the legacy of Henrietta Lacks