The NIH has announced an agreement with Henrietta Lacks’ descendants to obtain their consent for access to and use of the HeLa genome (the agreement applies only to NIH funded research, but the hope is that others will agree to it as well).
I think the NIH handled this reasonably well.
However, there are some issues raised by this case and this decision that warrant further discussion. Exactly when, and under what conditions, should someone’s heirs be able to consent on their behalf? And how do we deal with the genetic privacy issues?
Read the full, original story here: With Its HeLa Genome Agreement, The NIH Embraces A Expansive Definition Of Familial Consent In Genetics