Why would members of the Lacks family living today object to researchers sequencing the genome of HeLa cells?
In her nonfiction account of the life of Henrietta Lacks, the unauthorized use of her cells for beneficial medical research, and her family's efforts at gaining some measure of autonomy over their late relative's living tissue and compensation for that use, Rebecca Skloot goes into considerable detail on the reasons why surviving family members objected to the sequencing of the genome. It is possible that, had medical researchers approached Lacks' family with their intentions and with a proposal for financial compensation, then the family would have consented to the research that was performed utilizing Henrietta's cells. Instead, however, those researchers exploited Henrietta's life and death for their own professional and financial benefit. While much good came from that research, the fact that it was not authorized by Henrietta's heirs, and that they did not learn of their late-relative's exploitation by the medical research community for decades after that research began, constituted a highly immoral and potentially illegal activity on the part of the medical community. As the Lacks family's website states:
"Even though Henrietta’s cells launched a multimillion-dollar industry that sells human biological materials, the family never saw any of the profits or that Henrietta received the recognition she deserves."
In short, the Lacks family objected to the fact that Henrietta's cells were being used without their knowledge or consent, and that others were making considerable sums of money from that research without any compensatory agreements existing for the benefit of Henrietta's family. It is important to keep in mind the historical context in which this episode originated. Henrietta died in 1951 -- a period of time when African Americans continued to be denied fundamental civil rights in American society. Indeed, the infamous and extraordinarily immoral Tuskegee Syphilis experiment was still ongoing, and the exploitation of blacks in all areas remained widespread. That the overwhelmingly Caucasian medical community would cavalierly exploit an African American patient for its own purposes was hardly unique. It was, however, just as pernicious in its conduct. Henrietta's heirs, who learned of the exploitation of her tissue 20 years after it began, were understandably upset by this information, and their reservations about the sequencing of genome was a product of this history.