THE Advent of genetic research testing
“With the ability to identify genes from a blood sample or even a single cell, the risk of blood draw was no longer just a minor infection or the pain of a needle stick - it was that someone could uncover your genetic information. It was about violation of privacy.” - p. 187 The Immortal Life of Henrietta Lacks
This critical revelation comes in a chapter of Rebecca Skloot’s biography The Immortal Life of Henrietta Lacks. In 1973, a group of scientific researchers met for the First International Workshop on Human Gene Mapping, which was a stepping stone for the Human Genome Project. Victor McKusick, a renowned Johns Hopkins medical geneticist, was the first person to publish the name behind the magnificent HeLa cells: Henrietta Lacks. At the time, scientists around the world were discovering that HeLa cells had contaminated nearly every experiment, making their seemingly renowned findings questionable. McKusick informed the group that he could obtain DNA samples from Henrietta Lacks’ descendants, which would help scientists to test for HLA markers, making it possible to identify HeLa cells. Deborah Lacks, one of Henrietta Lacks' daughters, gave blood at McKusick’s office on June 26, 1974.
This is a picture of the Lacks family in 2009. Deborah Lacks died in 2009 at the age of 60. Scroll over the icons to see how each member fits into the Lacks family tree.
To this day, the Lacks family, which suffers financially, has received no financial compensation, despite the billions of dollars that came from HeLa research and its products. But in 1974, when Deborah went into McKusick's office to give blood, ethics were not a consideration. Geneticists were on the brink of a whole new era of genetics and DNA research, which would bring with it the need for genetic privacy protection. |
McKusick did not tell Deborah the reason she was giving blood. She worried that she would develop the same cancer her mother had. Deborah was completely unaware that her mother's cells were alive until she went to McKusick's office, and McKusick told her about her mother's immortal HeLa cells. McKusick did not inform her that he was asking her to give blood for research. The possibility of McKusick uncovering her genetic information never crossed her mind. Unfortunately, this is one of the many instances in which the Lacks family was exploited and uninformed, beginning with the extraction of HeLa cells, of which Henrietta Lacks had no knowledge. Skloot’s biography illuminates the the exploitation and injustices endured by the Lacks family. Deborah Lacks even learned most of what she knew about HeLa cells through the internet; no one bothered to give her or other Lacks family members a clear and thorough explanation.
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Deborah Lacks with her brother Sonny's granddaughters.
Prior to the 1970s, during which genetic research flourished, it had seemed that the only concern of giving blood was “a minor infection or the pain of a needle stick.” However, the 1970s ushered in the possibility of privacy concerns. New genetic research led the world into an era where a simple DNA sample could reveal everything about a person from benign characteristics like hair color to information concerning the risk of cancer or mental illness.