Rebecca Skloot, author of the extremely popular non-fiction novel “The Immortal Life of Henrietta Lacks,” once again raises important moral and ethical dilemmas behind the ubiquitous HeLa cells, this time surrounding the recent publication of the HeLa cell genome.
LAST week, scientists sequenced the genome of cells taken without consent from a woman named Henrietta Lacks. She was a black tobacco farmer and mother of five, and though she died in 1951, her cells, code-named HeLa, live on. They were used to help develop our most important vaccines and cancer medications, in vitro fertilization, gene mapping, cloning. Now they may finally help create laws to protect her family’s privacy — and yours.
Now, HeLa cells cells have been back in the news, when researchers published the HeLa cell genome, seemingly without consent from the Lacks family. This raises new questions surrounding genetic information and privacy. How much can we learn from a raw human genome? What are the major ethical issues behind using genetic material in research, and what does it mean to give consent?
I highly recommend Rebecca Skloot’s book, as well as this new article. Issues behind the dissemination of genetic information, and what sort of laws/oversight need to be used to protect individual privacy are quickly becoming increasingly relevant to the research community and the general public.