The National Institutes of Health and the Lacks family have agreed to give scientists access to the genetic sequence of the cells, with some restrictions to safeguard her relatives' privacy. NIH Director Dr. Francis Collins the agreement covering these so-called Wednesday, and how it came to be in the journal Nature.
The situation, he says, shines a bright light on a rising ethical issue in biomedicine: How do researchers protect people's privacy when they donate samples for genomic sequencing and scientific experiments?
The guidelines governing this issue were drawn up in the 1970s. And they clearly lag behind the technology. The ability to decode a whole genome makes it virtually impossible to hide a donor's identity when they give specimens for research.
"Science moves forward, advances happen in biology based upon resources that have been donated," Collins tells NPR. "Policy reforms have to be undertaken in order to keep up with the science."
