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
- The Debt Ceiling Law is now a Tool of Partisan Political Power; Abolish It
- Amitai Etzioni, Theorist of Communitarianism, Dies at 94
- Kagan, Sotomayor Join SCOTUS Cons in Sticking it to Unions
- New Evidence: Rehnquist Pretty Much OK with Plessy v. Ferguson
- Ohio Unions Link Academic Freedom and the Freedom to Strike
- First Round of Obama Administration Oral Histories Focus on Political Fault Lines and Policy Tradeoffs
- The Tulsa Race Massacre was an Attack on Black People; Rebuilding Policies were an Attack on Black Wealth
- British Universities are Researching Ties to Slavery. Conservative Alumni Say "Enough"
- Martha Hodes Reconstructs Her Memory of a 1970 Hijacking
- Jeremi Suri: Texas Higher Ed Conflict "Doesn't Have to Be This Way"
- New transcript of Ayn Rand at West Point in 1974 shows she claimed “savage" Indians had no right to live here just because they were born here
- The Mexican War Suggests Ukraine May End Up Conceding Crimea. World War I Suggests the Price May Be Tragic if it Doesn't
- The Vietnam War Crimes You Never Heard Of