The original content of Democracy Now! Headlines appears under the Creative
Commons BY-NC-ND 3.0 License (United States). For more, including their other
shows and media, visit www.democracynow.org.
August 8, 2013

Family of Henrietta Lacks Reaches Deal on Use of Her Genome 
------------------------------------------------------------


 
The National Institutes of Health says it has reached an unprecedented
deal with the family of Henrietta Lacks that gives them a say in how her
genetic material is used for research. Henrietta Lacks was a poor,
African-American tobacco farmer who died of cervical cancer in Baltimore
in 1951. Her cancer cells — collected without her consent or
knowledge — did not die in the lab, as others had. Instead they
multiplied and became the backbone for tens of thousands of studies,
aiding in key medical breakthroughs. But Lacks's family did not learn
how the cells were being used until decades later. Their struggle to
come to terms with that lack of control became the subject of the
bestselling book "The Immortal Life of Henrietta Lacks," by Rebecca
Skloot. Then, this year, a group of European scientists published the
genome of one of Lacks' cell lines without telling the family. Family
members objected and finally reached a deal that will require
researchers to submit applications to access Lacks' genome which will be
reviewed by a panel that includes two members of the Lacks family. The
family will also receive credit in scientific papers.

 

.