The Lacks Family are direct descendants from Henrietta Lacks, a cervical cancer patient whose biospecimens were used without her consent to create immortal cell lines now known as HeLa cells. The impoverished Lacks Family, with no knowledge of the cell lines or their use in biomedical research, had no opportunity to understand or benefit from the potential commercial applications of the biospecimens. Since the publication of Rebecca Skloot’s The Immortal Life of Henrietta Lacks, the Lacks Family has spoken to audiences about their family’s experience both as research participants and as participants informing and directing research and policy.
We are delighted that Ms. Veronica Robinson and Ms. Shirley Lacks will be speaking with us about the legacy of their family's experience in biomedical research and its potential impact on participation and ethics in this modern era of precision medicine.
Veronica Spencer Robinson (far right) is Henrietta Lacks’ great granddaughter. Ms. Robinson is a Lacks Family representative on a panel for the National Institutes of Health (NIH) responsible for reviewing applications for the use of the HeLa cells in research.
Shirley Lacks is Henrietta's daughter-in-law and was close friends with Henrietta's daughter Deborah.
The invitation of the Lacks family was made possible, in part, by a grant from the Nord Family Foundation through CWRU's UCITE Nord Grant, the CWRU Cell and Molecular Biology Training Program (T32 GM008056-34), and the CWRU Department of Bioethics.
PUBLICATIONS ON THE LACKS FAMILY
Beskow LM. Lessons from HeLa Cells: The Ethics and Policy of Biospecimens. Ann Rev Genomics Hum Genet 2016. PMID:26979405