NIH Finally Makes Good with Henrietta Lacks' Family – And It's About Time, Ethicist Says

Over the past six decades, huge medical advances have sprung from the cells of Henrietta Lacks, a poor, African-American mother of five who died in 1951 of cervical cancer. But Lacks never agreed that the cells from a biopsy before her death taken could be used for research. For years, her own family had no idea that her cells were still alive in petri dishes in scientists’ labs.
They eventually learned they had fueled a line called HeLa cells, which have generated billions of dollars, but they didn’t realize until this spring that her genome had been sequenced and made public for anyone to see. 
On Tuesday, the National Institute of Health announced it was, at long last, making good with Lacks’ family. Under a new agreement, Lack’s genome data will be accessible only to those who apply for and are granted permission. And two representatives of the Lacks family will serve on the NIH group responsible for reviewing biomedical researchers’ applications for controlled access to HeLa cells. Additionally, any researcher who uses that data will be asked to include an acknowledgement to the Lacks family in their publications.
The new understanding between the NIH and the Lacks family does not include any financial compensation for the family. The Lacks family hasn’t, and won’t, see a dime of the profits that came from the findings generated by HeLa cells. But this is a moral and ethical victory for a family long excluded from any acknowledgment and involvement in genetic research their matriarch made possible.
It took more than 60 years, but ethics has finally caught up to a particularly fast-moving area of science: taking tissue samples for genetic research. Thanks to the efforts of a dogged journalist, some very thoughtful science leaders in Europe and the U.S., and an ordinary family willing to learn about a complex subject and then to do the right thing to help you and me and our descendants, a long-standing wrong has now been fixed. 
The news of the day is that the analysis of the genetic makeup of HeLa cells, the most useful cells used in all of biomedical research, has been completed. But the real news here is that medicine and science have finally done right by the person from whom those cells were taken—Henrietta Lacks.
Lacks’ story was made famous in 2010 after publication of Rebecca Skloot’s award-winning book, “The Immortal Life of Henrietta Lacks,” which stayed on The New York Times best-seller list for two years. 
The book chronicled how before Lacks died died, a research team at Johns Hopkins University in Baltimore led by George Otto Gey took a sample of tissue from her cervix. He found he was able to grow them in dishes outside the human body. This was a major research breakthrough: having an immortal cell line gave researchers a crucial new tool against disease. Indeed, the first benefits from HeLa cells came in their use by Jonas Salk in developing the first vaccine against polio. Subsequently, scientists went on to use the cells in many experiments. More than 60,000 articles have appeared based on HeLa cell research including cancer and AIDS and even in developing vaccines for dogs, cats and other animals.
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.
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. 
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.  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.
article by Art Caplan via nbcnews.com