Part Seven of Seven-Part Blog Series by Guest Blogger Patrick Taylor
A suggestion runs through the debate on the NPRM to amend the Common Rule that the proposed changes are a tribute to Henrietta Lacks, a necessity so her story is not repeated.
That story was told in a the national bestseller The Immortal Life of Henrietta Lacks, a moving biography of the young woman whose aggressive tumor was the source of the ubiquitous HeLa cells (probably without her consent, certainly without her awareness of what followed); her family; the cells’ (and her) dehumanization into a research tool to be exploited unthinkingly; and the poverty, disconnection, racism, lack of health care and lack of concern for her family. Society and scientists received a bonanza, and did nothing for her family in return. The book criticizes phony consent, and advocates sharing cell line proceeds with donors and their families. It rekindled discussion of consent and racist legacies, while urging that injustice required social change.
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