By Donald Zuhn —

On Wednesday, the National
Institutes of Health (NIH) announced
that the agency had reached an understanding with the family of Ms. Henrietta
Lacks regarding access to genomic data for the HeLa cell line, which was
derived from cervical cancer cells taken from Ms. Lacks on February 8, 1951.  Ms. Lacks eventually died of cancer on October 4, 1951.  According to the NIH release, "the understanding
gives the Lacks family a seat at the table in reviewing applications for controlled
access to Henrietta Lacks' whole genome data."

NIH Director Dr. Francis S.
Collins indicated that the sequencing and posting of the HeLa genome by
researchers in Germany "brought into sharp relief important ethical and
policy issues."  In response to
concerns from the Lacks family, the German researchers took down the HeLa
genomic data.  Dr. Collins noted that the
NIH met with members of the Lacks family to listen to their concerns, and
"arrived at a path forward that respects their wishes and allows science
to progress."

The result of the discussions
between the NIH and the Lacks family is a new controlled access policy for full
genome sequence data from HeLa cells.  Under
the policy, researchers who agree to the terms set forth in the HeLa Genome
Data Use Agreement will be able to apply to the NIH for access to HeLa genomic
data.  In addition, two representatives
of the Lacks family will serve on a six-member working group that will review
proposals for access to the HeLa genomic data. 
NIH-funded researchers who obtain full genome sequence data from HeLa
cells will also have to deposit such data into a single database for future
sharing (other researchers are being encouraged to do the same).  Finally, all researchers who use or generate genomic
data from HeLa cells will now be asked to include an acknowledgement and
expression of gratitude to the Lacks family in their publications.

The NIH announcement also
appeared in the journal Nature, where it was accompanied by a paper on a whole
genome analysis of the CCL-2 strain of HeLa cells, which identifies an
insertion of the human papilloma virus near an oncogene that may explain the aggressiveness
of Ms. Lacks' cancer (Adey et al.,
"The haplotype-resolved genome and
epigenome of the aneuploid HeLa cancer cell line," Nature 500: 207–11 (08 August 2013)).