identity with initials wouldn’t have worked,” he said. “Anyone can figure out who she is, since
her name has already been connected with the cells.”
When it comes to the dead and privacy: For the most part, the dead do not have the same
right to privacy enjoyed by the living. One exception to that rule is HIPAA: “Even Thomas Jef-
ferson’s records, if they exist, are protected by HIPAA if they’re held by a covered entity,”
Gellman said. “A hospital can’t give away the records, regardless of whether the patient is
dead or alive. Your right to privacy under HIPAA continues to exist until the sun runs out of
hydrogen.”
One other point to consider: though Henrietta was dead and therefore without the privacy
rights of the living, many legal and privacy experts I talked with pointed out that the Lacks
family could have argued that the release of Henrietta’s medical records violated their privacy.
There was no precedent for such a case at that time, but there have been such cases since.
For more information on the laws regarding confidentiality of medical records, and the de-
bate surrounding them, see Lori Andrews’s “Medical Genetics: A Legal Frontier;” Confidential-
ity of Health Records by Herman Schuchman, Leila Foster, Sandra Nye, et al.; M. Siegler,
“Confidentiality in Medicine: A Decrepit Concept,” New England Journal of Medicine 307, no.
24 (December 9, 1982): 1518–1521; R. M. Gellman, “Prescribing Privacy,” North Carolina
Law Review 62, no. 255 (January 1984); “Report of Ad Hoc Committee on Privacy and Con-
fidentiality,” American Statistician 31, no. 2 (May 1977); C. Holden, “Health Records and Pri-
vacy: What Would Hippocrates Say?” Science 198, no. 4315 (October 28, 1977); and C. Lev-
ine, “Sharing Secrets: Health Records and Health Hazards,” The Hastings Center Report 7,
no. 6 (December 1977).
For related cases, see Simonsen v. Swensen (104 Neb. 224,117N.W. 831, 832,1920);
Hague v. Williams (37 N.J. 328, 181 A.2d 345. 1962); Hammonds v. Aetna Casualty and
Surety Co. (243 F Supp. 793 N.D. Ohio, 1965); MacDonald v. Clinger (84 A.D.2d 482, 446
N.Y.S.2d 801, 806); Griffen v. Medical Society of State of New York (11 N.Y.S.2d 109, 7 Misc.
2d 549. 1939); Feeney v. Young (191, A.D. 501, 181 N.Y.S. 481. 1920); Doe v. Roe (93 Misc.
2d 201,400 N.Y.S.2d 668, 677. 1977); Banks v. King Features Syndicate, Inc. (30 F Supp.
- S.D.N.Y 1939); Bazemore v. Savannah Hospital (171 Ga. 257, 155 S.E. 194. 1930); and
Barber v. Time (348 Mo. 1199, 159 S.W.2d 291. 1942).