Institutional Efforts to Control Disclosure of Patient Identity

Key Insight

Early in the history of HeLa cells, a consensus existed among researchers and medical professionals, including Dr. Gey and Dr. TeLinde, to refer to the cell strain as 'HeLa' and withhold the patient's actual name to protect privacy. This conviction was challenged when media interest in the 'human interest' aspect of the HeLa story grew. Jerome Syverton, for instance, affirmed his agreement with Dr. Gey on maintaining patient anonymity even after the Minneapolis Star published a version of her name.

Roland H. Berg from the NFIP pressed for the patient's name to be included in an article, arguing it was 'intrinsic' to engaging public interest and claiming her identity was already 'public record' due to the Minneapolis Star's report. Dr. Gey and Dr. TeLinde resisted this, with TeLinde expressing concern about 'trouble' from disclosure, even though patient confidentiality was not yet legally mandated. Gey suggested a fictitious name as a compromise, demonstrating an internal conflict over balancing public interest with patient privacy.

When Collier's magazine sought to publish a similar story, Dr. Gey adopted a stricter stance. He agreed to an interview only if he could approve the final article and if the patient's personal story and full name were excluded. The magazine's editor initially pushed back for the 'human story,' but ultimately conceded. The published Collier's article, despite being reviewed by Johns Hopkins, used the pseudonym 'Helen L.' and included misinformation about the cells' origin. This deliberate or unwitting creation of pseudonyms and control over publication content successfully obscured the true identity of the HeLa cell donor, Henrietta Lacks, for decades, preventing her family from discovering her cells' ongoing use.