https://www.nature.com/news/deal-done-overhela-cell-line-1.13511
The Lacks legacy
Story of the world’s most widely used human biological research tissue.
1951 Biopsy of Henrietta Lacks’ tumour collected without her knowledge or consent. HeLa cell line soon established.
1971 The journal Obstetrics and Gynecology names Henrietta Lacks as HeLa source; word later spreads in Nature , Science and mainstream press.
1973 Lacks family members learn about HeLa cells (pictured). Scientists later collect their blood to map HeLa genes, without proper informed consent.
1996 Lacks family honoured at the first annual HeLa Cancer Control Symposium, organized by former student of scientist who isolated HeLa cells.
2013 HeLa genome published without knowledge of the family, which later endorses restricted access to HeLa genome data.
Earlier this year:
… a team led by Lars Steinmetz at the European Molecular Biology Laboratory (EMBL) in Heidelberg, Germany, published a paper called ‘The genomic and transcriptomic landscape of a HeLa cell line’ (J. J. M. Landry et al. Genes Genomes Genet. Genomic and Transcriptomic Landscape of a HeLa Cell Line | G3 Genes|Genomes|Genetics | Oxford Academic; 2013). News coverage (see go.nature.com/inxzuw) noted the link to Henrietta Lacks, but not privacy concerns.
Skloot, in a later article for The New York Times , made clear that family members were unhappy that — yet again — they had not been consulted. “I think it’s private information,” Henrietta’s granddaughter Jeri Lacks-Whye told Nature . “I look at it as though these are my grandmother’s medical records that are just out there for the world to see.” The EMBL team removed the data from public access, and hoped that a solution could be reached.
And so, on the evening of 8 April, Collins met a group of Henrietta Lacks’ children and grandchildren for dinner and discussion at the Johns Hopkins campus. Along with Collins was his chief adviser and two mediators from the university. Skloot phoned in to the meeting, which was to be the first of three.
Collins says that family members told him how unsettling it had been to learn about HeLa cells decades after Lacks died. They peppered Collins with questions about genetic sequencing and how Lacks’ cells had been used. “I felt like I was taking ‘Biology 101’,” says Lacks-Whye. Collins told them that Shendure’s team might have identified the genetic change that made their grandmother’s tumour so aggressive and HeLa cells so prolific. The NIH later put the family in touch with experts in clinical genetics who told them what health information could be gleaned from the genome, and the NIH offered to help family members have their own genomes sequenced and interpreted.