In the Spring 2013 issue of Space Safety Magazine, senior editorialist Tereza Pultarova related the story of Henrietta Lacks, an uneducated black woman in segregated Virginia who died of cervical cancer in 1951 – but not before samples of her cells were taken without her permission for research purposes. The cells, now called HeLa cells from a combination of her names, were the first immortal line of human cells. The endlessly reproducing cell line was instrumental in developing cures and vaccines for half a dozen illnesses and soon became commercialized for distribution to laboratories around the world. For many years, Lacks’ family knew nothing of this; when they found out, it was only because scientists wanted some more samples from the same DNA for comparison.
At long last, however, it seems the Lacks family may finally get a say in this involuntary contribution to medical research. NPR reports that in March 2013, a team of German scientists decoded the DNA of the HeLa cells and posted it on their website.
The scientists hadn’t broken any laws. But they did trample on the Lacks family’s privacy.
Hidden in the sequence is potential biomedical information about Henrietta’s descendents, such as their risk for getting Alzheimer’s disease or bipolar disorder.
“The cells contain within them the original information that Henrietta was born with,” Collins says. “And it is possible to go back and discern some of the hereditary information, which, of course, is then information she may have passed on to her children and grandchildren.”
The German scientists took down the code following the uproar, but keeping the DNA private was not a good solution either – these cells and their characteristics remain intrinsic to many lines of medical research today. So at long last, the research community in the form of the US National Institute of Health (NIH) decided to ask for permission. NPR relates:
The NIH then set up a committee that included the Lacks family to figure out a way to publish the HeLa genome, while still respecting the family’s privacy.
The committee agreed to provide the DNA sequence to researchers on a case-by-case basis. Scientists will apply to get access to the code, and a group at NIH that includes Collins and two members of the Lacks family will review each request.
It only took 62 years for medical ethics to finally catch up with the Lacks family.
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