The New York Times recently published an article (1) describing concerns about protecting the privacy and interests of the individuals who provide biologic samples for scientific research. The article revolves around two recent publications by researchers in Europe and the United States (2, 3) who detailed the complete genomic sequence of HeLa cells. As explained in a best-selling book, The Immortal Life of Henrietta Lacks, by Rebecca Skloot (4), HeLa cells are derived from a cervical cancer that was removed from a 31-year-old woman, Henrietta Lacks, in 1951. They are a milestone in human biologic research because they were the first human cell line that could be maintained indefinitely in tissue culture. As such, they are invaluable models of human cell biology and have been used in over 74,000 scientific studies.
However, from an ethical standpoint they also represent a great challenge. Henrietta Lacks was poor, black and uneducated and never gave consent for the use of her cells in scientific research. Her family did not find out that her cells were maintained in culture until 22 years after her death, never shared in any profits that derived from discoveries involving the use of her cells and, up until recently, had no influence over how the cells were used or the process involved in accessing their genetic information. The later point is critical because as we better understand the implications that variations (polymorphisms) in the sequence of the genome have on the risk for diseases, such information may have great import on the ability of tissue donors and their relatives to obtain medical insurance or even maintain relatively normal lifestyles outside the glare of publicity. To address these issues, the National Institutes of Health of the United States negotiated an agreement with the Lacks family on how the data of the genetic make up of HeLa cells is maintained and who can have access to this database. They agreed that the information from both published studies would be maintained in the NIH’s database of Genotypes and Phenotypes. To access this information, investigators need to apply to the “HeLa Genome Data Access Working Group”, which will always contain two members of the Lacks family. The working group will review these requests and decide whether or not to grant access.
While this is a first step, it remains to be seen how the coming revolution in the relationship of genomic variation and human disease, which is being brought about by newer and relatively inexpensive whole genome sequencing technologies, will affect the ethics of preserving subjects’ rights and privacy. For diseases like osteoporosis, which have a significant genetic component, such technologies bring the promise of defining the multiple polymorphisms that combine to alter bone mass and the risk of developing the disease. However, the issue of how to handle such information and protect it from unauthorized access is equally challenging. This needs to be resolved before we can proceed to make the definitive associations that define the risks of developing the disease.
Farmington Connecticut, USA
The Genome and Privacy
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