After a series of talks, NIH established the HeLa Genome Data Access Working Group of the Advisory Committee to the Director, which is a special committee charged with reviewing the release of data from the HeLa Genome with input from two serving members of the Lacks family (National Institutes of Health Advisory Committee to the Director HeLa Genome Data Access Working Group, 2013). These laudable efforts on the part of leadership in the biomedical research community demonstrate a swift and thoughtful response to the Lacks family's disgruntlement with the investigators' failure to consult with them about publicizing information that could reveal heritable traits and information about Lacks and her descendants. They also demonstrate the potential for public backlash against policies perceived to be contrary to accepted ethical norms.
