Sandra Shapshay : Human Tissue Research, Consent and Justice: What the case of Henrietta Lacks can still teach us today

[Original Abstract from Lecture]

The Immortal Life of Henrietta lacks sparked broad policy change in the U.S. regarding consent procedures for human tissue research. In 2015, the Department of Health and Human Services 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 talk, Dr. Shapshay addresses some of the major arguments against such regulatory changes. For instance, Chadwick and Berg stress a duty to participate in research for the benefit of others; Knoppers and Chadwick further criticize the emphasis on individualism and autonomy over the value of solidarity in contemporary research ethics and policy. Her aim is to counter these arguments, to support the proposed regulatory changes in the U.S. regarding tissue research, and to highlight important lessons we have yet to fully appreciate from the case of Henrietta Lacks.