After reading this book I felt that the story of Henrietta Lacks should be taught to students along with the story of how her cells have benefited multiple fields of science. And it particularly made me feel strongly about the lack of consent that she and her family had in the entire process. There are more than a few colleges that have made the book the campus suggested read for all incoming freshmen - which is a really great idea, and a start at least.
To understand more about why further breaches of privacy matter so much to this family it's important to learn how the genes were obtained originally, in what circumstances, and how the family were treated by scientists throughout all that period. Short version: not well.
The Immortal Life of Henrietta Lacks, the Sequel (opinion), By Rebecca Skloot, Published: March 23, 2013; New York Times
"Last week, scientists sequenced the genome of cells taken without consent from a woman named Henrietta Lacks. She was a black tobacco farmer and mother of five, and though she died in 1951, her cells, code-named HeLa, live on. They were used to help develop our most important vaccines and cancer medications, in vitro fertilization, gene mapping, cloning. Now they may finally help create laws to protect her family’s privacy — and yours.
...On its own, the HeLa genome doesn’t say anything specific about Lacks: it’s a string of billions of letters that detail the genetic information that makes up a HeLa cell, which is useful for science. A news release from the European Molecular Biology Laboratory, where the HeLa genome was sequenced, said, “We cannot infer anything about Henrietta Lacks’s genome, or of her descendants, from the data generated in this study.”
But that’s not true. And a few scientists decided to prove it. One uploaded HeLa’s genome to a public Web site called SNPedia, a Wikipedia-like site for translating genetic information. Minutes later, it produced a report full of personal information about Henrietta Lacks, and her family. (The scientist kept that report confidential, sharing it only with me.) Until recently, few people had the ability to process raw genome data like this. Now anyone who can send an e-mail can do it. No one knows what we may someday learn about Lacks’s great-grandchildren from her genome, but we know this: the view we have today of genomes is like a world map, but Google Street View is coming very soon.
Scientifically speaking, that’s good news. There’s a lot of hope for using technology like this for affordable “personalized medicine.” But legally and ethically speaking, we’re not ready for it.
As Francis S. Collins, director of the National Institutes of Health, says: “This latest HeLa situation really shows us that our policy is lagging years and maybe decades behind the science. It’s time to catch up.” The regulations governing this sort of research were written in the 1970s, long before anyone imagined what you could learn from a bit of DNA. They are largely based on the now outdated belief that if samples are “anonymized” (i.e., your name is removed), there’s no need to get consent before using them in research.
...The Lacks family is proud of HeLa’s contributions to society, and they don’t want to stop HeLa research. But they do want to learn about the HeLa genome — how it can be used for the good of science while still protecting the family’s privacy — so they can decide whether to consent to its publication. And they want researchers to acknowledge that HeLa cells are not anonymous and should be treated accordingly.
After hearing from the Lacks family, the European team apologized, revised the news release and quietly took the data off-line. (At least 15 people had already downloaded it.) They also pointed to other databases that had published portions of Henrietta Lacks’s genetic data (also without consent). They hope to talk with the Lacks family to determine how to handle the HeLa genome while working toward creating international standards for handling these issues."