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ADVANCE Discourse: Lab

In the Genes

Published March 27, 2013 4:40 PM by Michael Jones

The ethical implications of genetic sequencing are really only just beginning to be fully realized, and these questions continue to contribute to the growing debate over information provided by the human genome.  A recent story from NPR chronicled Henrietta Lacks and the surprisingly indefinite life of her cells. In the article, Rebecca Skloot, author of The Immortal Life of Henrietta Lacks, weighed in on the possible consequences of continued research without further privacy laws – not only to protect the subjects of genomic research, but also their families and generations to come.

“We have more questions [about privacy] than answers at this point,” said Skloot in the NPR article.  “One of the questions that comes up is, ‘Can you hide the parts of this genome that are Henrietta?’ The answer seems to be no.”

The story of Henrietta Lacks starts out like many others.  She was diagnosed with cervical cancer in 1951 and later died.  According to the article, “her doctor, without telling her, took a little piece of her tumor to study it” – which he did in his laboratory at Johns Hopkins, and the subsequent research wasn’t mentioned to her family until the 1970s.  What was so strange about Henrietta’s cells was that they didn’t stop reproducing.  Based on “their surprising ability to grow indefinitely,” the “HeLa” cells have been used for a wide variety of experiments, including research into “cloning, the effects of radiation, and the polio vaccine.”

Naturally, when a group of European researchers decoded her entire genome and released it on the web, the Lacks family descendants asked to have the information taken down until they had their chance to take a look. The NPR story cited that some of the HeLa genome had already been available “for years,” along with claims that no personal information could be attached to Henrietta or her descendants after the release of the full genome, but it quickly became apparent that at least some of the information provided in sequencing could do just that.  After a request from the Lacks family, the research was removed from the web.

“They don’t want to stop science,” Skloot continued, regarding Henrietta Lacks’ family. “They don’t want people to stop doing research on HeLa.  So they said, ‘Take it offline.  And then we want to sit down and learn about this stuff so that we can decide whether we want to give consent.’”

The impact of genetic research is a ripple effect, going beyond the privacy of the donor to what could potentially be entire families.   The NPR article noted, “Though Henrietta Lacks is no longer alive, releasing reports about her genetic information also invariably releases some information about the DNA of her descendants.” The issue of privacy rests at the forefront of the argument on genetic sequencing.  Despite the apparent need for across-the-board regulation, the question remains how can the proper measures be put into place to protect donors and donor families, while simultaneously continuing to advocate progress?  

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