Henrietta Lacks’s Family Seeks Compensation

Family members of Lacks, the donor behind the widely used HeLa cell line, are planning to sue Johns Hopkins University.

By | February 16, 2017

WIKIMEDIA, EMWSeveral family members of Henrietta Lacks, the unwitting donor of tumor cells developed into the widely used HeLa cell line, say they were never compensated for the cells. They are now planning to sue Johns Hopkins University, which developed the cell line without Lacks’s permission several decades ago, according to The Baltimore Sun.

“Everyone else is making funds off of Henrietta’s cells,” Lacks’s grandson, Ron Lacks, told the Sun. “I am sure my grandmother is up in heaven saying, ‘Well, what about my family?’”

Johns Hopkins told the newspaper that the institution had never patented nor profited from the cells.

The Lacks story was documented in a book, The Immortal Life of Henrietta Lacks, which highlighted how the paucity of informed consent affected her family. In 2013, family members worked out a deal with the National Institutes of Health for the appropriate sharing of the HeLa genome with researchers. At the time, journalist Rebecca Skloot, who wrote The Immortal Life, told The Scientist that commercialization was discussed during negotiations between the Lackses and the NIH, but that science was the focus. “I was with the Lacks family as they did an interview the other day, and what they said basically was, ‘Money is not our big concern in this right now.’”

Lacks’s son Lawrence Lacks, who joins his son and daughter-in-law in asking for financial compensation, told the Sun he was not part of the agreement with the NIH. According to the newspaper, “the family said they want to her cells to be owned by her estate and they would set up a foundation to allow everyone to benefit from the cells.”

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Avatar of: Ashley ANT

Ashley ANT

Posts: 1

February 22, 2017

"US Supreme Court had this year ruled that unmodified genes could not be patented. Lacks-Whye says that the family does not want to dwell on money — and that her father has often said he “feels compensated by knowing what his mother has been doing for the world”.

In the end, the family decided that it wanted the data to be available under a restricted-access system similar to the NIH dbGaP database, which links individuals’ genetic make-up to traits and diseases. Researchers would apply for permission to acquire the data and agree to use them for biomedical research only, and would not contact Lacks family members. A committee that includes family members will handle requests, and papers that use the data will recognize Henrietta Lacks and her kin."

http://www.nature.com/news/deal-done-over-hela-cell-line-1.13511

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