When Henrietta Lacks was diagnosed with cervical cancer in 1951, little did she know that cancer tumor cells removed from her diseased cervix without her permission would become the first human cell line to be established in culture. These so-called immortal cells have become the most widely used human cell line in biomedical research today. In fact, it was research using HeLa cells that led Jonas Salk to develop the vaccine against the polio virus, a scientific discovery that had a major impact on public health around the world. You can read more details about how HeLa cells came to be used in scientific research and the impact this had on the Lacks family in Rebecca Skloot’s excellent book titled The Immortal Life of Henrietta Lacks.
At the time Henrietta Lacks received treatment for her disease, the rules regulating patient privacy were quite different than what they are today. In that era, it was not unusual for doctors to remove cells from patients without their or their families’ permission. The Lacks family had no idea that Henrietta’s tumor cells had been cultured until decades later when they began receiving requests from researchers asking for samples of their own cells. Imagine their surprise and confusion!
And consider for a moment how you would feel if your complete genetic make-up was made available to anyone who wanted to look at it. That’s what happened earlier this year when the entire HeLa genome sequence was published in the journal G3: Genes, Genomes, Genetics and made available without restriction. The HeLa genome sequence was eventually removed from public access, and earlier this month Lacks’ descendents reached an agreement with the National Institutes of Health to restrict access to the genomic data to scientists through the National Center for Biotechnology Information (NCBI) database. This was a major step forward with regard to patients’ rights to keep their genetic information private. Nevertheless, the controversy surrounding the ethical issues of genomic research continues.
Is it possible for your own cells to be sequenced and used in research without your knowledge or permission? You bet it is. Even with informed consent and HIPAA privacy rules, when cells are removed from your body, as when a surgeon excises a tumor, they can be used for subsequent research and analysis as long as the patient source of the specimen is not identifiable. But whether it’s possible to keep specimens completely anonymous is unlikely, given the technological sophistication in use in biomedical research.
The tide may be changing. A Medscape article ('Unique' NIH Agreement with Family over HeLa Cell Genome. Medscape. August 7, 2013) reports that the U.S. Department of Health and Human Services (HHS) is proposing changes that will protect volunteers who participate in scientific research. In some research studies, participants are being asked to give a broad consent with regard to how their specimens will be used in future research. In exchange, they have the option to be updated on the actual research being performed with their samples. If volunteers don’t want their specimens being used that way, they will be able to withdraw consent.
Hayes believes that informed consent is crucial to medical research and patient privacy. We each have an opportunity to make our own contributions toward scientific research, but no one should have to worry about how that decision impacts privacy by thoroughly reading the informed consent documents. In essence, these are legal contracts that should be read in their entirety before signing. We each have the choice to suggest changes if we object to any part of consent, as well as refuse to sign and participate in the research. The right to choose lies with each us.
Would Henrietta Lacks have given her blessing had she been told about the research that would be performed with her cells? We have no way of knowing that answer. But we hope her descendents feel pride in knowing the enormous contribution HeLa cells have made to scientific research.