The downside of this story is that no one said anything to Lacks herself about taking her cells -- nor did anyone get permission from her family. And as the years went by, and some people began to make money from the cells no one ever revealed this to Henrietta's descendants, as is told in Skloot's wonderful book. But that failure has now been fixed.
After a team of scientists from Europe at the European Molecular Biology Laboratory published the genetic makeup of HeLa cells in March, Lacks' grandchildren contacted the European Lab and asked that they withdraw the paper. They were concerned that personal medical information about their family could be deduced by anyone who had the full genome map in their possession.
The European group pulled the paper and apologized to the Lacks family for putting their privacy at risk. Following that, Skloot and the Lacks family worked with NIH Director Francis S. Collins and NIH Deputy Director for Science, Outreach, and Policy Kathy L. Hudson to set up three meetings in Baltimore, along with scientists and ethicists from Johns Hopkins to talk about how to proceed with publishing information about the genetic makeup of HeLa cells.
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Skloot, who listened in on the meetings by phone, said she knew that a historic moment was occurring. "It was a big moment, a hopeful moment, sitting down with the family and bringing so many years of research without consent to an end," she said.
The family was excited that getting the genetic map of HeLa cells out to the research community could potentially help make even more advancements to human health. But, they also, according to Skloot, wanted to know if their privacy would be put at risk if the genome information was public. Would anyone try to patent the information? And would anyone make money by publishing their subsequent research?
Each question was resolved. An arrangement was made with the family's consent not to put the entire genome into papers or online to help protect their privacy -- instead, access to the full genome would be limited to researchers. No family member ever said they expected money, but right in the middle of the meetings, the U.S. Supreme Court ruled that naturally occurring genes could not be patented, making the issue of compensation much less important.
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Hudson told me that she and Collins had, "an amazing experience getting to know several members of the Lacks family and to work through these challenges with them. The contributions of HeLa cells to so many areas of biology and medicine should be a source of great pride [to the family] and the availability of the sequence will continue to add to that legacy. If you think about all the acknowledgements we make in scientific papers to the folks who have helped advance our research, it is certainly fitting to express gratitude to Henrietta and her family for what they have done for biology."
And in reaching this sound moral solution, 62 years of mistreating and ignoring a woman and her family who unknowingly helped so many live better lives have finally come to an end.
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Today, consent is routinely sought today for taking tissue samples. The issue of privacy and how to protect it must now be added to that consent. Acknowledging the contributions achieved by gifts from those who will donate seems a sound policy. And discussions of commercialization, while less pressing due to the Supreme Court ruling barring patents, still ought to be part of informed consent going forward.
Henrietta Lacks allowed medicine to make great strides in the struggle against illness and premature death. Six decades later, her descendants have allowed ethics to make a great stride as well.
—Art Caplan, Ph.D., NBC News contributor.