Protect Individual Privacy in Genome Sequencing


Target: National Institutes of Health Director Dr. Francis S. Collins

Goal: Mandate individuals’ consent before sequencing their DNA and protect their rights to have their private information respected

Henrietta Lacks was thirty-one years old when cervical cancer took her life and doctors took her cells. Unique for their ability to thrive in a lab, a quality earning them the nickname “immortal,” the eponymous HeLa cells were shipped around the world to support research that enabled a number of scientific breakthroughs from major insight into cancer to the polio vaccine to over 76,000 published studies.

Unfortunately, all these gains were made possible without the consent of this dying woman, and through the protracted suffering of her surviving relatives. The lack of regulation concerning this practice at the time her cells were taken notwithstanding, Ms. Lacks was denied a voice in having parts of her body removed, transported, studied, and reproduced. No one asked her family’s permission to undertake or publish these numerous studies or to keep growing the cells of their mother, aunt, grandmother to support those studies. The Lacks family found out in 1973, over 2o years since Ms. Lack’s death, that their mother’s cells were “in effect, scattered across the planet.”

Now, not even a recent agreement between the National Institutes of Health, the medical research agency under the U.S. Department Health and Human Services, and the Lacks family can mask the glaring lack of policy that protects individuals’ right to privacy where genome sequencing is concerned. After years of protest and legal battles, the Lacks family will not be financially compensated, but two family members can act as members of an NIH group reviewing applications to access the genome data.

For the New York Times, Dr. Sharp, director of Biomedical Ethics at the Mayo Clinic, asserts “there is absolutely a need for a new policy” to address the issue of relatives’ privacy regarding research into their family genomes, especially now that it is possible to reveal a person’s identity through sequencing. The ultimate benefits to regulation, besides protecting people’s identities, are in supporting responsible science to research cures for devastating diseases like cancer. Yet, for such a breakthrough to occur, immense trust between many researchers and individuals is integral, something that government policy can facilitate.

Sign the petition below and help stem more suffering like that experienced by the Lacks family. It is time to learn from history and progress responsibly.


Dear National Institutes of Health Director Dr. Francis S. Collins,

I recognize the recent agreement between the NIH and the family of Henrietta Lacks made to address genome researchers’ violation of the family’s privacy. You and your agency have made a key step in maintaining the integrity of genome sequencing and remediating the issue of relatives’ privacy where such research is concerned. However, I urge you now to build on this momentum and initiate a broader policy to create a relationship of mutual trust between researcher and individual once for and all.

The Lacks family suffered immensely and protractedly, fighting endless legal battles and battling their own poor health, before your agency offered the agreement. By gathering your full resources once more, you can put a stop to further misery of this kind in other families. In order to support the prodigious research essential for greater insight into curing diseases such as cancer, individuals must be able to trust researchers with their personal information. A policy to mandate their consent before having genomes sequenced and regulate their ethical treatment throughout the research can guide and build this relationship. I ask that you continue your ground-breaking leadership and initiate its creation. Your people’s health and wellbeing depend on it.


[Your Name Here]

Photo Credit: Wikipedia

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43 Signatures

  • Alice Rim
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  • Terrie Phenicie
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