Recent publication of Henrietta Lacks' genome sequence on the internet provides a case in point. Although the HeLa story has caused a stir across the United States—leading to a public apology by Johns Hopkins University to the Lacks family—Skloot's publication did not dissuade researchers in Germany from publishing her full genome earlier this year in 2013, again without prior consent (Skloot, 2013). Researchers and journal editors, while still following all rules, had seemingly overlooked any questions about privacy and consent for the HeLa genome (National Institutes of Health Advisory Committee to the Director HeLa Genome Data Access Working Group, 2013). The public, however, was not forgiving. The public posting evoked visceral reactions among researchers, patient advocates, bioethicists and members of Lacks' family who were concerned about the privacy implications for Lacks and her descendants (National Institutes of Health Advisory Committee to the Director HeLa Genome Data Access Working Group, 2013). In response, the investigators removed Lack's genomic sequence from the public domain and other papers were put on hold while the National Institutes of Health (NIH) initiated a negotiation with the Lacks family (National Institutes of Health Advisory Committee to the Director HeLa Genome Data Access Working Group, 2013).
