Learning the wrong lesson on privacy from Henrietta Lacks
From the article:
In her acclaimed 2010 book, “The Immortal Life of Henrietta Lacks,” Rebecca Skloot tells the story of a poor black woman with cervical cancer who checked into Johns Hopkins Hospital in 1951. While performing surgery to remove the cancer, Lacks’s doctor also took a biopsy of her healthy cells without securing her consent. The samples were given to a researcher who cultured the cells and found that they had amazing resiliency. Over ensuing decades, these “HeLa” cells, as they came to be known, were used worldwide in biomedical science, saving millions of lives — and making billions of dollars. Unfortunately, Lacks was not so lucky. Neither the surgery nor the later discoveries could save her life.
Now, the federal government has proposed controversial changes to the rules governing medical research using human subjects. The changes would expand regulation to cover new domains in hopes of protecting the Henrietta Lackses of today.bioethics human subjects research human tissue privacy