More Than Meets The Irb: A Joint Initiative Of Washington University In St. Louis And Prim&r

In today’s episode of More than Meets the IRB, we listen in on a conversation from PRIM&R’s AER14 Conference among members of Henrietta Lacks’ family, a member of the NIH, and a representative from Johns Hopkins University. We hear the initial perspectives and processes the Lacks family went through in understanding the choices they had to make regarding genomic data from the HeLa cells, in addition to what has changed since Rebecca Skloot’s book, The Immortal Life of Henrietta Lacks, was published. Importance of disclosing as much information as clearly as possible. Several of the Lacks family members describe the process by which they were informed about what a genome was in addition to benefits and risks of the information being used for research. They also discuss being given the opportunity to ask as many questions as they needed of NIH director Dr. Francis Collins, which enabled them to fully understand the issue and make the best possible decision for each family member. Giving the opportunity