Many people would be happy to share blood, tissue, or other samples for biomedical research, but they just want to be asked first, writes Rebecca Skloot in an op-ed at the New York Times. Henrietta Lacks' family — Skloot wrote The Immortal Life of Henrietta Lacks, a book about cancer cells obtained from Lacks without her knowledge and studied in labs the world over — is proud of its role in medical research and acknowledges the importance of tissue research, but, the family says its permission should've been sought.
The US National Institutes of Health is seeking a change to its Common Rule, which protects human research subjects, Skloot notes. The proposed alterations would require researchers to obtain secondary consent for any additional research on leftover biospecimens. Previously, as long as the samples were de-identified, researchers could use the samples without any additional consent. But, as Harvard's Yaniv Erlich and others have reported, DNA is an identifying feature.
A broad consent — one that seeks permission to store tissue for future as-yet-undetermined research, to share participants' identities with other researchers with privacy controls in place, and to allow for re-contact — might satisfy these new rules, Skloot says.
So far, the debate about the proposed rule has been largely between scientists, research institutions, bioethicists, and industry groups, but not the public, Skloot says. She adds that she knows that people out there have strong feelings on the matter.
"Some believe their souls live on in the disembodied cells. Others feel anonymous biospecimens are of no consequence to the person they came from, so it's unethical not to use them to advance science, especially since everyone hopes to benefit from such research when they're sick," Skloot writes. "Some worry that genetic information will be linked to them, their families, or their cultural group in harmful or discriminatory ways — particularly minorities."
The comment period on the proposed rule change ends tomorrow.