Debating Bioethics Openly

Researchers and bioethicists need to take advantage of events such as the recent publication of the HeLa genome to engage the public on topics of privacy, biobank regulation, and more.

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The recent decision by European researchers to publish online—but then to quickly take down—the genome sequence of HeLa cells represents a missed opportunity for scientists to engage in a conversation with the public about the complex set of bioethical issues surrounding the growing tissue research industry. As emphasized in the best-selling book The Immortal Life of Henrietta Lacks, these ethical issues include informed consent and the protection of vulnerable subjects, but other topics such as privacy are also particularly relevant.

Researchers at the European Molecular Biology Laboratory (EMBL) in Heidelberg, Germany, announced in March that they had, for the first time, sequenced the full genome of the HeLa tissue culture line, named after Henrietta Lacks, a poor, African-American mother of five whose cells were removed ...

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