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.
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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.
To help answer remaining questions about who would have access to the HeLa genome, NIH members worked to explain what Henrietta Lacks’ tissue cells had done for the world of medicine and the possibilities that her (and their) genomic data could provide to further research. After careful consideration, the NIH and the Lacks family came to a decision wherein access to the genome would be allowed, but under restricted circumstances: the information would be placed in a protected database in which would only be available on request to NIH-approved researchers, and researchers would be required acknowledge the contribution of Henrietta Lacks and her family in addition to carefully reporting any findings and intellectual property implications derived from use of the genome.