Until recently, very few people knew the name Henrietta Lacks, or what she has contributed to science. Through the voice of her daughter, and with the help of journalist Rebecca Skloot, the name Henrietta Lacks is synonymous with the HeLa cells from Ms. Lacks that were the first immortal, and stable cell line to be developed by researchers.
HeLa cells have been pivotal to the development of many achievements in medicine that today we all take for granted. Most biomedical science researchers know about, and even regularly use, HeLa cells. In fact, I myself used HeLa cells back when I was actively working the lab. The publication of The Immortal Life of Henrietta Lacks revealed the details of how the HeLa cells came to be, and how her family came to learn of the existence of the HeLa cells.
At the beginning of this year (2013), a group of German researchers had successfully completed the sequencing of the HeLa cell genome, and had placed this information in a publicly accessible database. This data has become critical to our understanding of how various tumor types arise and cancers progress.
The HeLa cell story points to a lack of standards that dates back to the 1950s, especially in the context of informed consent and voluntary participation in research.
Due to public awareness of Ms. Lacks’ story, de-identifying the genomic data became impossible after the genetic data was published in the database. The German researchers, to their credit, immediately removed the sequence from public access once this information came to light.
Now, after the NIH leadership and the Lacks family have met, researchers will have access to the HeLa cell genome, and the Lacks family will have a say in whom has access to the information, as well as how the genomic data is used.
The HeLa cell story points to a lack of standards that dates back to the 1950s, especially in the context of informed consent and voluntary participation in research. It also points to the irony that exists in that Ms. Lacks family will likely not have access to many of the advances that the HeLa cells have given rise to. Both of these are important issues of current biomedical research and bioethics policy discussions.
It seems appropriate that in this unique type of situation the family ought to have some participation in the decision on how the genomic data and information is used. But it would be impractical for this to be the model going forward. For every individual who has contributed a biological specimen to a Biobank to have a specific decision making role in how their specimen and data are used would put a significant barrier in front of researchers.
Many academic medical centers with Biobanks have put in place Community Advisory Boards (CABs) to provide a mechanism by which there is some voice at the table in terms of oversight and use from people who are contributors. These CABs are limited to providing input to their local institutions’ Biobanks, and not all Biobanks have associated CABs.
One thought on this story is that it highlights the clear tensions between the goals of genomic research and the NIH, and the desire to protect the confidentiality and privacy of individuals who contribute to the research and their family members – a tension that is only likely to increase as technologies develop that allow the uniqueness of an individual’s DNA to be linked to that individual.
We, as a society, as a large community, need to work together to create mechanisms facilitating research for both the common good, and that of the individual.
Jennifer McCormick is a Consultant for the department of General Internal Medicine at Mayo Clinic, as well as an Assistant Professor of Biomedical Ethics. She also works with the Center for Individualized Medicine on Bioethics.