The Immortal Life Of Henrietta Lacks Part 43

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).

Chapter 18: The Strangest Hybrid

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 doc.u.menting the history of cell culture research in s.p.a.ce include Allan A. Katzberg, "The Effects of s.p.a.ce Flights on Living Human Cells," Lectures in Aeros.p.a.ce Medicine, School of Aeros.p.a.ce Medicine (1960); and K. d.i.c.kson, "Summary of Biological s.p.a.ceflight Experiments with Cells," ASGSB Bulletin 4, no. 2 (July 1991).

Though the research done on HeLa cells in s.p.a.ce 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 s.p.a.ce. 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 (18991973)," 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 Seances de l'Academie 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," Was.h.i.+ngton Post (March 1, 1965).

Chapter 20: The HeLa Bomb

For this chapter I relied on communications and other doc.u.ments 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 a.s.sociation, Held on September 1115, 1966," National Cancer Inst.i.tute 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. Yos.h.i.+da, 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.

Chapter 21: Night Doctors

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 a.s.sociation Bulletin (1945); W. M. Cobb, "Surgery and the Negro Physician: Some Parallels in Background," Journal of the National Medical a.s.sociation (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 Was.h.i.+ngton'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 doc.u.ments 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 t.i.tled "Johns Hopkins University School of Medicine: A Chronicle. Story of Criminal Gene Research." For further reading, see Harriet Was.h.i.+ngton, "Born for Evil?" in Roelcke and Maio, Twentieth Century Ethics of Human Subjects Research (2004).

Sources for the Hopkins lead-study story include court doc.u.ments and Health and Human Services records, as well as an interview with a source connected to the case, Ericka Grimes v. Kennedy Kreiger Inst.i.tute, Inc. (24-C-99925 and 24-C-9566067/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).

Chapter 22: "The Fame She So Richly Deserves"

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 (18991970): 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).

PART THREE: IMMORTALITY

Chapter 23: "It's Alive"

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): 1216.

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 doc.u.mentation of the relevant regulations protecting human subjects in research, see "The Inst.i.tutional Guide to DHEW Policy on Protection of Human Subjects," DHEW Publication No. (NIH) 72102 (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).

Chapter 24: "Least They Can Do"

What started as Microbiological a.s.sociates 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 5P01GM019489020025.

Chapter 25: "Who Told You You Could Sell My Spleen?"

Much of the Moore story appears in court and government doc.u.ments, 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).

The Mo-cell patent is no. 4,438,032, available at Patft.uspto.gov.

The literature regarding the Moore trial and its implications is vast. Some useful sources include William J. Curran, "Scientific and Commercial Development of Human Cell Lines," New England Journal of Medicine 324, no. 14 (April 4, 1991); David W. Golde, "Correspondence: Commercial Development of Human Cell Lines," New England Journal of Medicine, June 13, 1991; G. Annas, "Outrageous Fortune: Selling Other People's Cells," The Hastings Center Report (November-December 1990); B. J. Trout, "Patent Law-A Patient Seeks a Portion of the Biotechnological Patent Profits in Moore v. Regents of the University of California," Journal of Corporation Law (Winter 1992); and G. B. White and K. W O'Connor, "Rights, Duties and Commercial Interests: John Moore versus the Regents of the University of California," Cancer Investigation 8 (1990).

For a selection of media reports about the John Moore case, see Alan L. Otten, "Researchers' Use of Blood, Bodily Tissues Raises Questions About Sharing Profits," Wall Street Journal, January 29, 1996; "Court Rules Cells Are the Patient's Property," Science, August 1988; Judith Stone, "Cells for Sale," Discover, August 1988; Joan O'C. Hamilton, "Who Told You You Could Sell My Spleen?" BusinessWeek, April 3, 1990; "When Science Outruns Law," Was.h.i.+ngton Post, July 13, 1990; and M. Barinaga, "A Muted Victory for the Biotech Industry," Science 249, no. 4966 (July 20, 1990).

For the regulatory response to the Moore case, see "U.S. Congressional Office of Technology a.s.sessment, New Developments in Biotechnology: Owners.h.i.+p of Human Tissues and Cells-Special Report," Government Printing Office (March 1987); "Report on the Biotechnology Industry in the United States: Prepared for the U.S. Congressional Office of Technology a.s.sessment," National Technical Information Service, U.S. Department of Commerce (May 1, 1987); and "Science, Technology and the Const.i.tution," U.S. Congressional Office of Technology a.s.sessment (September 1987). See also the never-pa.s.sed "Life Patenting Moratorium Act of 1993," (103rd Congress, S.387) introduced February 18, 1993.