Chapter 23: “It’s Alive”
This chapter relied in part on letters housed at the AMCMA, on Deborah Lacks’s medical re-
cords, and on “Proceedings for the New Haven Conference (1973): First International Work-
shop on Human Gene Mapping,” Cyto genetics and Cell Genetics 13 (1974): 1–216.
For information on Victor McKusick’s career, see the National Library of Medicine at
nlm.nih.gov/news/victor_mckusick_profiles09.html. His genetic database, now called OMIM,
can be found at ncbi.nlm.nih.gov/omim/.
For selected documentation of the relevant regulations protecting human subjects in re-
search, see “The Institutional Guide to DHEW Policy on Protection of Human Subjects,”
DHEW Publication No. (NIH) 72–102 (December 1, 1971); “NIH Guide for Grants and Con-
tracts,” U.S. Department of Health, Education, and Welfare, no. 18 (April 14, 1972); “Policies
for Protecting All Human Subjects in Research Announced,” NIH Record (October 9, 1973);
and “Protection of Human Subjects,” Department of Health, Education, and Welfare, Federal
Register 39, no. 105, part 2 (May 30, 1974).
For more information on the history of oversight of research on human subjects, see The
Human Radiation Experiments: Final Report of the President’s Advisory Committee (Oxford
University Press, available at hss.energy.gov/HealthSafety/ohre/roadmap/index.html).