The Immortal Life of Henrietta Lacks (50 page)

For the definitive history of informed consent, see Ruth Faden and Tom Beauchamp’s
A History and Theory of Informed Consent
. For the first
court case mentioning “informed consent,” see
Salgo v. Leland Stanford Jr. University Board of Trustees
(Civ. No. 17045. First Dist., Div. One, 1957).

Instructions for growing HeLa at home were published in C. L. Stong, “The Amateur Scientist: How to Perform Experiments with Animal Cells Living in Tissue Culture,”
Scientific American
, April 1966.

Sources documenting the history of cell culture research in space include Allan A. Katzberg, “The Effects of Space Flights on Living Human Cells,” Lectures in Aerospace Medicine, School of Aerospace Medicine (1960); and K. Dickson, “Summary of Biological Spaceflight Experiments with Cells,”
ASGSB Bulletin
4, no. 2 (July 1991).

Though the research done on HeLa cells in space was legitimate and useful, we now know that it was part of a cover-up for a reconnaissance project that involved photographing the Soviet Union from space. For information on the use of “biological payloads” as cover for spy missions, see
Eye in the Sky: The Story of the Corona Spy Satellites
, edited by Dwayne A. Day et al.

The early paper suggesting the possibility of HeLa contamination is L. Coriell et al., “Common Antigens in Tissue Culture Cell Lines,”
Science
, July 25, 1958. Other resources related to early concern over culture contamination include L. B. Robinson et al., “Contamination of Human Cell Cultures by Pleuropneumonialike Organisms,”
Science
124, no. 3232 (December 7, 1956); R. R. Gurner, R. A. Coombs, and R. Stevenson, “Results of Tests for the Species of Origins of Cell Lines by Means of the Mixed Agglutination Reaction,”
Experimental Cell Research
28 (September 1962); R. Dulbecco, “Transformation of Cells in Vitro by Viruses,”
Science
142 (November 15, 1963); R. Stevenson, “Cell Culture Collection Committee in the United States,” in
Cancer Cells in Culture
, edited by H. Katsuta (1968). For the history of the ATCC, see R. Stevenson, “Collection, Preservation, Characterization and Distribution of Cell Cultures,”
Proceedings, Symposium on the Characterization and Uses of Human Diploid Cell Strains: Opatija
(1963); and W. Clark and D. Geary, “The Story of the American Type Culture Collection: Its History and Development (1899–1973),”
Advances in Applied Microbiology
17 (1974).

Important sources on early cell hybrid research include Barski, Sorieul, and Cornefert, “Production of Cells of a ‘Hybrid’ Nature in Cultures in Vitro of 2 Cellular Strains in Combination,”
Comptes Rendus Hebdoma daires des Séances de l’Académie des Sciences
215 (October 24, 1960); H. Harris and J. F Watkins, “Hybrid Cells Derived from Mouse and Man: Artificial
Heterokaryons of Mammalian Cells from Different Species,”
Nature
205 (February 13, 1965); M. Weiss and H. Green, “Human-Mouse Hybrid Cell Lines Containing Partial Complements of Human Chromosomes and Functioning Human Genes,”
Proceedings of the National Academy of Sciences
58, no. 3 (September 15, 1967); and B. Ephrussi and C. Weiss, “Hybrid Somatic Cells,”
Scientific American
20, no. 4 (April 1969).

For additional information on Harris’s hybrid research, see his “The Formation and Characteristics of Hybrid Cells,” in
Cell Fusion: The Dunham Lectures (1970); The Cells of the Body: A History of Somatic Cell Genetics;
“Behaviour of Differentiated Nuclei in Heterokaryons of Animal Cells from Different Species,”
Nature
206 (1965); “The Reactivation of the Red Cell Nucleus,”
Journal of Cell Science
2 (1967); and H. Harris and P. R. Harris, “Synthesis of an Enzyme Determined by an Erythrocyte Nucleus in a Hybrid Cell,”
Journal of Cell Science
5 (1966).

Extensive media coverage included “Man-Animal Cells Are Bred in Lab,”
The
[London]
Sunday Times
(February 14, 1965); and “Of Mice and Men,”
Washington Post
(March 1, 1965).

For this chapter I relied on communications and other documents housed at the AMCA and the TCAA, and on “The Proceedings of the Second Decennial Review Conference on Cell Tissue and Organ Culture, The Tissue Culture Association, Held on September 11–15, 1966,”
National Cancer Institute Monographs
58, no. 26 (November 15, 1967).

The vast number of scientific papers about culture contamination include S. M. Gartler, “Apparent HeLa Cell Contamination of Human Heteroploid Cell Lines,”
Nature
217 (February 4, 1968); N. Auerspberg and S. M. Gartler, “Isoenzyme Stability in Human Heteroploid Cell Lines,”
Experimental Cell Research
61 (August 1970); E. E. Fraley, S. Ecker, and M. M. Vincent, “Spontaneous in Vitro Neoplastic Transformation of Adult Human Prostatic Epithelium,”
Science
170, no. 3957 (October 30, 1970); A. Yoshida, S. Watanabe, and S. M. Gartler, “Identification of HeLa Cell Glucose 6-phosphate Dehydrogenase,”
Biochemical Genetics
5 (1971); W. D. Peterson et al., “Glucose-6-Phosphate Dehydrogenase Isoenzymes in Human Cell Cultures Determined by Sucrose-Agar Gel and Cellulose Acetate Zymograms,”
Proceedings of the Society for Experimental Biology and Medicine
128, no. 3 (July 1968); Y. Matsuya and H. Green, “Somatic Cell Hybrid Between the Established Human Line D98 (presumptive HeLa) and 3T3,”
Science
163, no. 3868 (February 14, 1969); and C. S. Stulberg,
L. Coriell, et al., “The Animal Cell Culture Collection,”
In Vitro
5 (1970).

For a detailed account of the contamination controversy, see
A Conspiracy of Cells
, by Michael Gold.

Sources for information about night doctors and the history of black Americans and medical research include
Night Riders in Black Folk History
, by Gladys-Marie Fry; T. L. Savitt, “The Use of Blacks for Medical Experimentation and Demonstration in the Old South,”
Journal of Southern History
48, no. 3 (August 1982);
Medicine and Slavery: The Disease and Health Care of Blacks in Antebellum Virginia;
F. C. Waite, “Grave Robbing in New England,”
Medical Library Association Bulletin
(1945); W. M. Cobb, “Surgery and the Negro Physician: Some Parallels in Background,
“ Journal of the National Medical Association
(May 1951); V. N. Gamble, “A Legacy of Distrust: African Americans and Medical Research,”
American Journal of Preventive Medicine
9 (1993); V. N. Gamble, “Under the Shadow of Tuskegee: African Americans and Health Care,”
American Journal of Public Health
87, no. 11 (November 1997).

For the most detailed and accessible account available, see Harriet Washington’s
Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present
.

For the history of Hopkins, see notes for
chapter 1
.

For documents and other materials relating to the 1969 ACLU lawsuit over Hopkins’s research into a genetic predisposition to criminal activity, see Jay Katz’s
Experimentation with Human Beings
, chapter titled “Johns Hopkins University School of Medicine: A Chronicle. Story of Criminal Gene Research.” For further reading, see Harriet Washington, “Born for Evil?” in Roelcke and Maio,
Twentieth Century Ethics of Human Subjects Research
(2004).

Sources for the Hopkins lead-study story include court documents and Health and Human Services records, as well as an interview with a source connected to the case,
Ericka Grimes v. Kennedy Kreiger Institute, Inc
. (24-C-99–925 and 24-C-95–66067/CL 193461). See also L. M. Kopelman, “Children as Research Subjects: Moral Disputes, Regulatory Guidance and Recent Court Decisions,”
Mount Sinai Medical Journal
(May 2006); and J. Pollak, “The Lead-Based Paint Abatement Repair & Maintenance Study in Baltimore: Historic Framework and Study Design,”
Journal of Health Care Law and Policy
(2002).

For the paper in which Henrietta’s real name was first published, see H. W. Jones, V. A. McKusick, P. S. Harper, and K. D. Wuu, “George Otto Gey (1899–1970): The HeLa Cell and a Reappraisal of Its Origin,”
Obstetrics and Gynecology
38, no. 6 (December 1971). Also see J. Douglas, “Who Was HeLa?”
Nature
242 (March 9, 1973); and J. Douglas, “HeLa,”
Nature
242 (April 20, 1973), and B. J. C, “HeLa (for Henrietta Lacks),”
Science
184, no. 4143 (June 21, 1974).

Information regarding the misdiagnosis of Henrietta’s cancer and whether that affected her treatment comes from interviews with Howard W Jones, Roland Pattillo, Robert Kurman, David Fishman, Carmel Cohen, and others. I also relied on several scientific papers, including S. B. Gusberg and J. A. Corscaden, “The Pathology and Treatment of Adenocarcinoma of the Cervix,”
Cancer
4, no. 5 (September 1951).

For sources regarding the HeLa contamination controversy, see notes for
chapter 20
. The text of the 1971 National Cancer Act can be found at cancer.gov/aboutnci/national-cancer-act-1971/allpages.

Sources regarding the ongoing controversy include L. Coriell, “Cell Repository,”
Science
180, no. 4084 (April 27, 1973); W A. Nelson-Rees et al., “Banded Marker Chromosomes as Indicators of Intraspecies Cellular Contamination,”
Science
184, no. 4141 (June 7, 1974); K. S. Lavappa et al., “Examination of ATCC Stocks for HeLa Marker Chromosomes in Human Cell Lines,”
Nature
259 (January 22, 1976); W K. Heneen, “HeLa Cells and Their Possible Contamination of Other Cell Lines: Karyotype Studies,”
Hereditas
82 (1976); W A. Nelson-Rees and R. R. Flandermeyer, “HeLa Cultures Defined,”
Science
191, no. 4222 (January 9, 1976); M. M. Webber, “Present Status of MA-160 Cell Line: Prostatic Epithelium or HeLa Cells?”
Investigative Urology
14, no. 5 (March 1977); and W A. Nelson-Rees, “The Identification and Monitoring of Cell Line Specificity,” in
Origin and Natural History of Cell Lines
(Alan R. Liss, Inc., 1978).

I also relied on both published and unpublished reflections by those directly involved in the controversy. Published articles include W A. Nelson-Rees, “Responsibility for Truth in Research,”
Philosophical Transactions of the Royal Society
356, no. 1410 (June 29, 2001); S. J. O’Brien, “Cell Culture Forensics,”
Proceedings of the National Academy of Sciences
98, no. 14 (July 3, 2001); and R. Chatterjee, “Cell Biology: A Lonely Crusade,”
Science 16
, no. 315 (February 16, 2007).

This chapter relied in part on letters housed at the AMCMA, on Deborah Lacks’s medical records, and on “Proceedings for the New Haven Conference (1973): First International Workshop 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 research, 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 Contracts,” 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).

What started as Microbiological Associates grew to become part of several other, larger companies, including Whittaker Corp, BioWhittaker, Invitrogen, Cambrex, BioReliance, and Avista Capital Partners; for the profiles of those companies and others that sell HeLa, see
OneSource CorpTech Company Profiles
or
Hoover.com
.

For HeLa pricing information, search the product catalogs of any number of biomedical supply companies, including
Invitrogen.com
.

For patent information, search for HeLa in Patft.uspto.gov.

For information on the ATCC as a nonprofit, including financial statements, search for American Type Culture Collection on
Guidestar.org
; for its HeLa catalog entry, visit
Atcc.org
and search for HeLa.

For information on HeLa-plant hybrids, see “People-Plants,”
News-week
, August 16, 1976; C. W Jones, I. A. Mastrangelo, H. H. Smith, H. Z. Liu, and R. A. Meck, “Interkingdom Fusion Between Human (HeLa) Cells and Tobacco Hybrid (GGLL) Protoplasts,”
Science
, July 30, 1976.

For an account of Dean Kraft’s attempts to kill HeLa cells using “psychic healing,” and thus cure cancer, see his book,
A Touch of Hope
, as well as related videos on
YouTube.com
(available by searching for Dean Kraft).

For the research done on the Lacks family’s blood samples, see S. H. Hsu, B. Z. Schacter, et al., “Genetic Characteristics of the HeLa Cell,”
Science
191, no. 4225 (January 30, 1976). That research was funded by NIH Grant number 5P01GM019489–020025.

Much of the Moore story appears in court and government documents, particularly the “Statement of John L. Moore Before the Subcommittee on Investigations and Oversight,” House Committee on Science and Technology Hearings on the Use of Human Patient Materials in the Development of Commercial Biomedical Products, October 29, 1985;
John Moore v. The Regents of the University of California et al
. (249 Cal. Rptr. 494); and
John Moore v. The Regents of the University of California et al
. (51 Cal.3d 120, 793 P.2d 479, 271 Cal. Rptr. 146).