As part two of our series on unethical treatment of Black people in science and medicine, we tell the story of Henrietta Lacks. We all owe Henrietta thanks for the birth of HeLa cells. These cells, which came from a cancerous tumor removed from Henrietta, became the first human cell line. HeLa started a biological revolution! Unfortunately, Henrietta and the Lacks family were uninformed and treated poorly by the medical staff and researchers involved in the process. Her experience illustrates how important and divisive informed consent and tissue bioethics still is in this country.
Sources:
Book: “The Immortal Life of Henrietta Lacks” - Rebecca Skloot
Update to the Common Rule: https://www.npr.org/sections/health-shots/2017/01/18/510442240/scientists-neednt-get-a-patients-consent-to-study-blood-or-dna
https://www.aamc.org/news-insights/5-things-you-need-know-about-revised-common-rule
Lacks family and privacy: https://www.npr.org/sections/health-shots/2013/08/07/209807857/decades-after-lacks-death-family-gets-a-say-on-her-cells
https://www.npr.org/blogs/health/2013/03/26/175351289/sequencing-of-hela-genome-revives-genetic-privacy-concerns
https://www.nih.gov/news-events/news-releases/nih-lacks-family-reach-understanding-share-genomic-data-hela-cells
Jim Watson interview: https://www.sciencealert.com/father-of-dna-james-watson-stripped-of-accolades-in-ugly-racism-row