In the journal Nature on Wednesday, a team of scientists from the University of Washington described the HeLa genome, which they recently sequenced. The project is a tour-de-force of DNA analysis, befitting the best-studied human cells in the world.<\/p>\n
But the research is exceptional for another reason. Henrietta Lacks, who was poor, black and uneducated, never consented to her cells\u2019 being studied. For 62 years, her family has been left out of the decision-making about that research. Now, over the past four months, the National Institutes of Health has come to an agreement with the Lacks family to grant them control over how Henrietta Lacks\u2019s genome is used.<\/p>\n
\u201cIn 20 years at N.I.H., I can\u2019t remember something like this,\u201d Francis S. Collins, the institute\u2019s director, said in an interview.<\/p>\n
Though the agreement, which was announced on Wednesday, is a milestone in the saga of Henrietta Lacks, it also draws attention to a lack of policies to balance the benefits of studying genomes with the risks to the privacy of people whose genomes are studied \u2014 as well as their relatives.<\/p>\n
As the journalist Rebecca Skloot recounted in her 2010 best-seller, \u201cThe Immortal Life of Henrietta Lacks,\u201d Ms. Lacks\u2019s cells were removed without her consent. She gave no permission for scientists to rear them. Compounding that injustice, the scientists studying the cells and developing lucrative medicines from them did not inform her family or share any profits. Her family discovered that their mother was, in effect, scattered across the planet in 1973, only when a scientist called to ask for her children\u2019s blood to study genes inherited from her. In the journal Nature on Wednesday, a team of scientists from the University of Washington described the HeLa genome, which they recently sequenced. The project is a tour-de-force of DNA analysis, befitting the best-studied human cells in the world. But the research is exceptional for another reason. Henrietta Lacks, who was poor, black and uneducated, […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"nf_dc_page":"","footnotes":""},"categories":[35],"tags":[],"class_list":["post-37114","post","type-post","status-publish","format-standard","hentry","category-important-news-stories"],"_links":{"self":[{"href":"https:\/\/uprisingradio.org\/home\/wp-json\/wp\/v2\/posts\/37114","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/uprisingradio.org\/home\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/uprisingradio.org\/home\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/uprisingradio.org\/home\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/uprisingradio.org\/home\/wp-json\/wp\/v2\/comments?post=37114"}],"version-history":[{"count":1,"href":"https:\/\/uprisingradio.org\/home\/wp-json\/wp\/v2\/posts\/37114\/revisions"}],"predecessor-version":[{"id":37115,"href":"https:\/\/uprisingradio.org\/home\/wp-json\/wp\/v2\/posts\/37114\/revisions\/37115"}],"wp:attachment":[{"href":"https:\/\/uprisingradio.org\/home\/wp-json\/wp\/v2\/media?parent=37114"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/uprisingradio.org\/home\/wp-json\/wp\/v2\/categories?post=37114"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/uprisingradio.org\/home\/wp-json\/wp\/v2\/tags?post=37114"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}
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