The saga of Henrietta Lacks continues
Wednesday, 03 April 2013 14:45

HeLa cells genome made public without family’s consent

by Nicole Rodman


By now, the story of the late Turner Station resident Henrietta Lacks is a familiar one.
    A tobacco farm worker from Virginia who moved to Maryland to seek work, Lacks lived on New Pittsburg Avenue in Turner Station until her death from cervical cancer in 1951.
    As Lacks lay dying at Johns Hopkins Hospital, her cells were harvested for research, without her or her family’s knowledge or consent.
    Distributed freely to scientists by doctors at Hopkins, the cells (known as HeLa cells after their donor) were used in medical research around the world.
    HeLa cells were used to develop the polio vaccine and were also used in at least two Nobel prize-winning projects.
    Though Lacks’ cells have aided countless researchers for more than 60 years, her family did not find out about the cells’ existence at all until 20 years after Lacks’ death.
    Today, much of her family still lives in Turner Station, and none have seen a dime despite the fortune made from products derived from HeLa cells.
    Last week, Lacks’ story took a new turn as Heidelberg, Germany-based European Molecular Biology Laboratory (EMBL) announced that it had sequenced the entire genome of the HeLa cells DNA and published the results online.
  
According to the federal Human Genome Research Institute, “a genome is an organism’s complete set of deoxyribonucleic acid (DNA), a chemical compound that contains the genetic instructions needed to develop and direct the activities of every organism.”
    Once sequenced, an individual’s genome can provide clues as to that person’s genetic traits and likelihood to develop certain conditions and diseases.
    The information on Lacks’ genome, released last week, was published online without the consent, or knowledge of, the Lacks family.
    While the German laboratory was not legally required to seek consent (no laws yet exist to govern genome privacy) many are angered by the fact that the scientists did not seek consent before making the genome results available.
    In an opinion piece by Rebecca Skloot, author of the 2010 book The Immortal Life of Henrietta Lacks, in last Saturday’s New York Times,  Skloot wrote about this latest twist in the Lacks saga.
    In the piece, Lacks’ granddaughter, Jeri Lacks-Whye, speaks out against the genome’s publication, saying, “That is private family information. It shouldn’t have been published without our consent.”
    For their part, EMBL researchers put out a press release stating that “we cannot infer anything about Henrietta Lacks’s genome, or of her descendants, from the data generated in this study.”   
    However, after hearing from Lacks’ family, they did apologize and remove the information from their website (though it had already been downloaded at least 15 times).
    Reaction to the genome’s publication has been mixed in the scientific community, with some saying that the HeLa cell line has been changed so many times through the years that it likely differs from Lacks’ actual DNA.
    Others argue that, through work done on HeLa cells over the years, information on the HeLa genome has already been made public.
    Critics, however, are decrying the fact that researchers did not seek consent, even though they were not legally obligated to.
    While the impact of publishing Lacks’ genome is still largely unknown, with advances in genome science, it is likely that, one day, an easy-to-use worldwide database will make it easier to determine a whole host of information about an individual based on their DNA.
    It is quite possible that such information could, one day, even be used by insurance companies to make decisions on who and what to cover.
    Since 1951, the case of Henrietta Lacks has raised issues regarding seeking consent from donors before using tissue and cells in scientific research.
    Still, Lacks’ legacy continues as scientists grapple with the legalities and ethics of consent in research.
    For their part, the National Institute of Health has proposed instituting new laws and regulations requiring those seeking to sequence a genome to seek consent.
    While no such laws have yet been developed, the case of Henrietta Lacks and her family remains a case study in what happens when scientific progress outpaces public policy.