Bioethics - Purdue Lectures in Ethics, Policy, and Science

Dr. Sandra Shapshay: Human Tissue Research, Consent and Justice

November 9 @ 5:30 PM - 7:00 PM - MJIS 1001


Published in 2010, Rebecca Skloot’s book The Immortal Life of Henrietta Lacks, offers a three-fold story.  It is the story of the development of the first immortal human cell line (called HeLa) and the scientific advances facilitated thereby. It is also the story of the African American woman from whom the cell line came: Henrietta Lacks was the great-great granddaughter of slaves, who grew up in extreme poverty in Virginia in the 1920s and who died of an aggressive cervical cancer in 1951 in the ward for “colored people” at Johns Hopkins Hospital. Finally, it is the story of her family members, who had no idea about the existence, importance and the financial gains made from HeLa cells until Skloot began her research.


This book sparked more than just an HBO film by the same name starring Oprah Winfrey, it also sparked an attempt at broad policy change in the U.S. regarding consent procedures for human tissue research. Currently, the regulations on research with human subjects issued by the Department of Health and Human Services (HHS) mandate informed consent for the use of biospecimens in research when those specimens are taken specifically for the purpose of research. However, no informed consent for research use is required for tissue samples taken in the course of clinical practice. In 2015, HHS proposed a rule change to give patients much greater control over the use of their biospecimens in research. Yet this effort failed due to backlash from the scientific community.


In this paper, I shall address some of the major arguments against such regulatory changes. For instance, Chadwick & Berg stress a duty to participate in research for the benefit of others; Knoppers & Chadwick further criticize the emphasis on individualism and autonomy over the value of solidarity in contemporary research ethics and policy. My aim is to counter these arguments and to support the proposed regulatory changes in the U.S. regarding tissue research. I hope to highlight important contemporary lessons we have yet to fully appreciate from the case of Henrietta Lacks.

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