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Compliance In Focus
Posted by John Lehmann on Wed, Aug 21, 2013

Small Victory for the Family of Henrietta Lacks

There is a new development in the story of Henrietta Lacks, the woman whose cancerous cellsSmall Victory for the Family of Henrietta Lacks Small Victory for the Family of Henrietta Lackswere obtained without her consent and developed into the immortal HeLa cell line.  You may recall that Henrietta presented to John Hopkins in Baltimore Maryland in 1951 and was treated for cervical cancer.  During her treatment, her doctors obtained a sample of healthy cervical cells along with a sample of the cancerous ones for testing.  Unexpectedly, Dr. George Otto Gey was able to keep the cells alive in a culture and they have been used without Henrietta’s permission in numerous research studies ever since.  In fact, you can still obtain a sample of HeLa cells today.  Unfortunately, Henrietta was never even informed of this and it wasn’t discovered until over 20 years later when Johns Hopkins contacted her children to see if they would be willing to give blood samples in order to better understand the immortal cells.  Not only has the Lacks family had no say in how Henrietta’s cells could be used, but they themselves have struggled to receive adequate medical care because the family has never been compensated in any way for their mother’s contribution to science.

A recent article in the New York Times by Monica Lopossay reports that the National Institute of Health (NIH) has made an unprecedented decision to allow her surviving family members to have a say in how her cells can be used for new research involving genotyping.  According to the article, any time someone applies for NIH funding for genome research involving their ancestor’s cell line, a committee at NIH will be assembled to review the proposed research and determine if it will be permitted.  More importantly, two members of the Lacks family must be present on the committee that gets to make these decisions.  The agreement was reached after the surviving members of the Lacks family raised concern about the possibility of having their privacy violated if the genome was publicly available. While the Lacks family will still not be compensated in any way, having a stake in the research that can be done with Henrietta’s cells can be described as a small victory in what some may consider a less than fortunate series of events in clinical research history.

Do you think this helps justify in any way what the Lacks family has endured?  Do you think it’s a small step in the right direction?  We would love to hear your thoughts on this controversial topic.

Photo Credit: Myles!

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Topics: NIH, Henrietta Lacks, New York Times, Clinical Research

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