Rebecca Skloot: The Immortal Life of Henrietta Lacks, the SequelRoundup: Media's Take
tags: genetics, New York Times, Henrietta Lacks, medical ethics, Rebecca Skloot
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.
The family has been through a lot with HeLa: they didn’t learn of the cells until 20 years after Lacks’s death, when scientists began using her children in research without their knowledge. Later their medical records were released to the press and published without consent. Because I wrote a book about Henrietta Lacks and her family, my in-box exploded when news of the genome broke. People wanted to know: did scientists get the family’s permission to publish her genetic information? The answer is no.
Imagine if someone secretly sent samples of your DNA to one of many companies that promise to tell you what your genes say about you. That report would list the good news (you’ll probably live to be 100) and the not-so-good news (you’ll most likely develop Alzheimer’s, bipolar disorder and maybe alcoholism). Now imagine they posted your genetic information online, with your name on it. Some people may not mind. But I assure you, many do: genetic information can be stigmatizing, and while it’s illegal for employers or health insurance providers to discriminate based on that information, this is not true for life insurance, disability coverage or long-term care....
comments powered by Disqus
- Inside Billy Graham's Powerful Relationship With U.S. Presidents
- Children have changed America before, braving fire hoses and police dogs for civil rights
- How the Activists Who Tore Down Durham's Confederate Statue Got Away With It
- Many Trump Voters Think We Need a White History Month
- How a team of sophisticated forgers at an Essex country house fooled the Nazis
- Historians fear ‘censorship’ under Poland’s Holocaust law
- How One Amateur Historian Brought Us the Stories of African-Americans Who Knew Abraham Lincoln
- History Coalition asks historians to "Urge Your Representative to Join the Congressional History Caucus"
- Dartmouth’s Randall Balmer: Under Trump, America's religious right is rewriting its code of ethics
- Was This Technology historian plagiarized? Sure seems like she was.