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
- Why more places are abandoning Columbus Day in favor of Indigenous Peoples’ Day
- Rudy Giuliani comparing impeachment to the Salem witch trials is a little right and a lot wrong, expert says
- U.N. Report Bolsters Theory That Hammarskjold Plane Was Downed
- Panama celebrates its black Christ, part of protest against colonialism and slavery
- Fundamentalism turns 100, a landmark for the Christian Right
- Labor Historian Staughton Lynd's Book Is Embraced by Google Workers and Uber Drivers
- Rick Perry recommended former ambassador, historian Daniel Yergin for Ukraine reforms-U.S. Energy Dept
- Ginsburg predicts historians will call this political era an 'aberration'
- American Historical Association Announces 2019 Prize Winners
- A New History Celebrates Brooklyn’s Heights, and Depths Image