Last week the National Institutes of Health (NIH) reached agreement with the family of Henrietta Lacks regarding access to her genetic data. That this is newsworthy comes first from the history of the cells extracted from Ms. Lacks in 1951. These cells, taken from a cancerous tumor, have been used extensively in the decades since in cell biology laboratories. Lacks was not asked for permission to use her cells in that way, and Rebecca Skloot’s book The Immortal Life of Henrietta Lacks, chronicles the story of Lacks, her family, and the HeLa cell line. (Yes the film is in the works, and yes, Oprah is involved.)
The agreement came about after the genome of the HeLa cell line was released by researchers in Germany earlier this year. Rebecca Skloot investigated, and the Lacks family was not consulted about the sequencing or the release of that genetic information. Skloot approached the NIH for a meeting with the family, which happened in April. The resulting agreement will place the genomic data in the database of Genotypes and Phenotypes administered by the NIH, and access to the information will be controlled. Interested researchers must request permission for access and deposit any subsequent genomic data into the same database. This policy is binding only on researchers with NIH funding. However, since the German researchers were persuaded to remove the genomic data they placed online, NIH Director Collins is persuaded that other scientists not constrained by the policy will not conduct research on the HeLa genome. Time will certainly tell.
The agreement with the Lacks family is arguably a special case (though the work of the Henrietta Lacks Foundation may eventually determine how many other people went through similar treatment), given the lack of consent when the cells were initially taken, and that Ms. Lacks died shortly thereafter. But because it is the first agreement of its kind, there are concerns that there may be unintended consequences in granting a family significant control over access to a family member’s genetic information.
For instance, if a person’s descendent objected to a person’s decision to have their genome sequenced and made available for research purposes, should they be able to overturn that decision? Consent, however, is not the only issue at play. There is the question of genetic privacy. Going back to the Lacks, a researcher who sequences a line of HeLa cells could possibly determine genetic information about her relatives without their knowledge or consent, violating their privacy. How can that privacy be protected? Should that privacy be protected? At what point are the privacy interests sufficient to outweigh the benefits of research conclusions obtained from the information?
Put another way, the genetic information of our relatives provide indirect information about ourselves, much in the same way as the communications patterns of people we interact with provide indirect data about us (hello to our friends at the National Security Agency). There are two line-drawing exercises ahead of us, if we are willing to conduct them.
Where should we draw a line on allowing access to genetic information to protect the privacy of relatives?
How well can such a line be drawn?
I don’t know the answer to either, but it would be helpful to find out. Not that it will be easy.