Human Cells Harvested for Science 50 Years Ago Live On: What Rules for Anonymity?

An intriguing article by Rebecca Skoot which appeared in a recent issue of The New York Times raises the question whether the genome of cells taken from a woman named Henrietta Lacks who died in 1951 should be allowed to remain linked to her name or whether scientists and health researchers should be required to make the DNA anonymous. When this African American woman died in Baltimore several decades ago, no one had sought or obtained consent from her or, after her death, from her relatives to permit the decades-long of use of the cells for research, including the creation of vaccines and cancer medications, gene mapping and many other medical research uses. In fact, it was 20 years after the woman’s death before her relatives learned of the connection. What is perhaps even more surprising about the story is that when it broke recently, many scientists said that the identity question was irrelevant because the reverse linkage could not be made. A few scientists who disagreed uploaded the data from the genome (called HeLa in the science community) to a public web site called SNPedia. Minutes later, it produced a report full of personal information about Henrietta Lacks – and her family. As the article’s author notes (she has written a book on the topic, The Immortal Life of Henrietta Lacks), from a purely scientific perspective the quick link and release of the ID is good news, but it poses currently puzzling legal questions and challenges with few concrete answers. Summary by: Richard Potter