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).
Chapter 24: “Least They Can Do”
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.
Chapter 25: “Who Told You You Could Sell My Spleen?”
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).
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,” Washington 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 Assessment, New Developments in Biotechnology: Ownership 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 Assessment,” National Technical Information Service, U.S. Department of Commerce (May 1, 1987); and “Science, Technology and the Constitution,” U.S. Congressional Office of Technology Assessment (September 1987). See also the never-passed “Life Patenting Moratorium Act of 1993,” (103rd Congress, S.387) introduced February 18, 1993.
Details of the oil-consuming bacteria involved in Chakrabarty’s lawsuit can be found in patent no. 4,259,444, available at Patft.uspto.gov. For more information on the lawsuit, see Diamond v. Chakrabarty (447 U.S. 303).
For further reading on other cell ownership cases mentioned in this chapter, see “Hayflick-NIH Settlement,” Science, January 15, 1982; L. Hayflick, “A Novel Technique for Transforming the Theft of Mortal Human Cells into Praiseworthy Federal Policy,” Experimental Gerontology 33, nos. 1–2 (January-March 1998); Marjorie Sun, “Scientists Settle Cell Line Dispute,” Science, April 22, 1983; and Ivor Royston, “Cell Lines from Human Patients: Who Owns Them?” presented at the AFCR Public Policy Symposium, 42nd Annual Meeting, Washington, D.C., May 6, 1985; and Miles Inc v. Scripps Clinic and Research Foundation et al. (89–56302).
Chapter 26: Breach of Privacy
Whether the publication of a person’s medical records would violate HIPAA today depends on many factors; most important, who released the records. HIPAA protects “all ‘individually identifiable health information’… in any form or media, whether electronic, paper, or oral,” but it only applies to “covered entities,” which are health-care providers and health insurers that “furnish, bill or receive payment for” health care, and who transmit any covered health information electronically. This means any noncovered entity can release or publish a person’s medical records without violating HIPAA.
According to Robert Gellman, a health-privacy expert who chaired a U.S. government subcommittee on privacy and confidentiality, any Hopkins faculty member releasing Henrietta’s medical information today would most likely violate HIPAA, because Hopkins is a covered entity.
However, in October 2009, as this book went to press, portions of Henrietta’s medical records were again published without her family’s permission, this time in a paper coauthored by Brendan Lucey, of Michael O’Callaghan Federal Hospital at Nellis Air Force Base; Walter A. Nelson-Rees, the HeLa contamination crusader who died two years before the article’s publication; and Grover Hutchins, the director of autopsy services at Johns Hopkins. See B. P. Lucey, W. A. Nelson-Rees, and G. M. Hutchins, “Henrietta Lacks, HeLa Cells, and Culture Contamination,” Archives of Pathology and Laboratory Medicine 133, no. 9 (September 2009).
Some of the information they published had previously appeared in Michael Gold’s Conspiracy of Cells. They also published new information, including, for the first time, photos of her cervical biopsies.
According to Gellman, “It seems quite likely that HIPAA was violated in this case. But the only way to know for sure is an investigation that would go into complicated factors, including how they got the medical records in the first place.” When I called Lucey, the paper’s primary author, and asked how he’d gotten her records, and whether anyone had sought the family’s permission to publish them, he told me the records had come from his coauthor, Hutchins, at Ho
pkins. “Ideally, you’d like to get family approval,” he said. “I believe Dr. Hutchins tried to track down a family member without success.” The authors had obtained IRB approval to publish a series of articles using autopsy reports; in the other articles, they’d used initials to conceal patients’ identities. Lucey pointed out that some of the information from Henrietta’s medical records had been previously published, as had her name. “In this case protecting her 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 Jefferson’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 debate surrounding them, see Lori Andrews’s “Medical Genetics: A Legal Frontier;” Confidentiality 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 Confidentiality,” American Statistician 31, no. 2 (May 1977); C. Holden, “Health Records and Privacy: What Would Hippocrates Say?” Science 198, no. 4315 (October 28, 1977); and C. Levine, “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. 352. 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).
Chapter 27: The Secret of Immortality
For more on Jeremy Rifkin’s lawsuits, see Foundation on Economic Trends et al. v. Otis R. Bowen et al. (No. 87–3393) and Foundation on Economic Trends et al. v. Margaret M. Heckler, Secretary of the Department of Health & Human Services et al. (756 F.2d 143). For media reports on the case, see Susan Okie, “Suit Filed Against Tests Using AIDS Virus Genes; Environmental Impact Studies Requested,” Washington Post, December 16, 1987; and William Booth, “Of Mice, Oncogenes and Rifkin,” Science 239, no. 4838 (January 22, 1988).
For the HeLa species debate, see L. Van Valen, “HeLa, a New Microbial Species,” Evolutionary Theory 10, no. 2 (1991).
For more on cell immortality, see L. Hayflick and P. S. Moorhead, “The Serial Cultivation of Human Diploid Cell Strains,” Experimental Cell Research, 25 (1961); L. Hayflick, “The Limited in Vitro Lifetime of Human Diploid Cell Strains,” Experimental Cell Research 37 (1965); G. B. Morin, “The Human Telomere Terminal Transferase Enzyme Is a Ribonucleoprotein That Synthesizes TTAGGG Repeats,” Cell 59 (1989); C. B. Harley, A. B. Futcher, and C. W Greider, “Telomeres Shorten During Ageing of Human Fibroblasts,” Nature 345 (May 31, 1990); C. W Greider and E. H. Blackburn, “Identification of Specific Telomere Terminal Transferase Activity in Tetrahymena Extracts,” Cell 43 (December 1985).
For further reading on research into aging and human life extension, see Stephen S. Hall’s Merchants of Immortality.
For a selection of HPV research involving HeLa cells, see Michael Boshart et al., “A New Type of Papillomavirus DNA, Its Presence in Genital Cancer Biopsies and in Cell Lines Derived from Cervical Cancer,” EMBO Journal 3, no. 5 (1984); R. A. Jesudasan et al., “Rearrangement of Chromosome Band nqi3 in HeLa Cells,” Anticancer Research 14 (1994); N. C. Popescu et al., “Integration Sites of Human Papillomavirus 18 DNA Sequences on HeLa Cell Chromosomes,” Cytogenetics and Cell Genetics 44 (1987); and E. S. Srivatsan et al., “Loss of Heterozygosity for Alleles on Chromosome 11 in Cervical Carcinoma,” American Journal of Human Genetics 49 (1991).
Chapter 28: After London
For HeLa symposium information, see notes for chapter 6.
For a sampling of Cofield’s long legal history, see Sir Keenan Kester Cofield v. ALA Public Service Commission et al. (No. 89–7787); United States of America v. Keenan Kester Cofield (No. 91–5957); Cofield v. the Henrietta Lacks Health History Foundation, Inc., et al. (CV-97–33934); United States of America v. Keenan Kester Cofield (99–5417); and Keenan Kester Cofield v. United States (1:08-mc-001 10-UNA).
Chapter 29: A Village of Henriettas
For the Hopkins Magazine story referenced here, see Rebecca Skloot, “Henrietta’s Dance,” Johns Hopkins Magazine, April 2000.
For other articles referenced in this chapter, see Rob Stepney, “Immortal, Divisible; Henrietta Lacks,” The Independent, March 13, 1994; “Human, Plant Cells Fused: Walking Carrots Next?” The Independent Record, August 8, 1976 (via the New York Times news service); Bryan Silcock, “Man-Animal Cells Are Bred in lab,” The [London] Sunday Times, February 14, 1965; and Michael Forsyth, “The Immortal Woman,” Weekly World News, June 3, 1997.
Chapter 31: Hela, Goddess of Death
The character named Hela appeared in many Marvel comic books. See, for example, “The Mighty Thor: The Icy Touch of Death!” Marvel Comics Group 1, no. 189 (June 1971).
Chaptee 33: The Hospital for the Negro Insane
For the article describing Crownsville’s history, see “Overcrowded Hospital ‘Loses’ Curable Patients,” Washington Post (November 26, 1958). The history of Crownsville is also documented in “Maryland’s Shame,” a series by Howard M. Norton in the Baltimore Sun (January 9–19, 1949), and in material provided to me by Crownsville Hospital Center, including their “Historic Overview,” “Census,” and “Small Area Plan: Community Facilities.”
A few years after Deborah and I visited Crownsville Hospital Center, it closed. For that story, see Robert Redding Jr., “Historic Mental Hospital Closes,” Washington Times (June 28, 2004), available at Washingtontimes.com/news/2004/jun/28/20040628–115142–8297r/#at.
Chapter 36: Heavenly Bodies
The Bible given to me by Gary Lacks in this chapter was Good News Bible: Today’s English Version (American Bible Society, 1992).
Afterword
The figures I cite on the number of Americans whose tissue is being used in research, as well as information on how that tissue is used, can be found in Elisa Eiseman and Susanne B. Haga’s Handbook of Human Tissue Sources. For the National Bioethics Advisory Commission’s investigation into the use of human tissues in research, and its policy recommendations, see Research Involving Human Biological Materials: Ethical Issues and Policy Guidance, vol. 1: Report and Recommendations of the National Bioethics Advisory Commission, and vol. 2: Commissioned Papers (1999).
The literature on the use of human tissues in research, and the ethical and policy debate surrounding it, is vast and includes E. W. Clayton, K. K. Steinberg, et al., “Informed Consent for Genetic Research on Stored Tissue Samples,” Journal of the American Medical Association 274, no. 22 (December 13, 1995): 1806–7, and resulting letters to the editor; The Stored Tissue Issue: Biomedical Research, Ethics, and Law in the Er
a of Genomic Medicine, by Robert F Weir and Robert S. Olick; Stored Tissue Samples: Ethical, Legal, and Public Policy Implications, edited by Robert F Weir; Body Parts: Property Rights and the Ownership of Human Biological Materials, by E. Richard Gold; Who Owns Life?, edited by David Magnus, Arthur Caplan, and Glenn McGee; and Body Bazaar, by Lori Andrews.
For a selection of related lawsuits, see Margaret Cramer Green v. Com missioner of Internal Revenue (74 T.C. 1229); United States of America v. Dorothy R. Garber (78–5024); Greenberg v. Miami Children’s Hospital Research Institute (264 F.Supp.2d 1064); Steven York v. Howard W. Jones et al. (89–373-N); The Washington University v. William J. Catalona, M.D., et al. (CV-01065 and 06–2301); Tilousi v. Arizona State University Board of Re gents (04-CV-1290); Metabolite Laboratories, Inc., and Competitive Technologies, Inc., v. Laboratory Corporation of America Holdings (03–1120); Association for Molecular Pathology et al. v. United States Patent and Trademark Office; Myriad Genetics et al. (case documents online at aclu.org/brca/); and Bearder et al. v. State of Minnesota and MDH (complaint online at cchconline.org/pr/pro31109.php).
About the Author
REBECCA SKLOOT is a science writer whose articles have appeared in The New York Times Magazine; O, The Oprah Magazine; Discover; Prevention; Glamour; and others. She has worked as a correspondent for NPR’s Radio Lab and PBS’s NOVA science NOW, and is a contributing editor at Popular Science magazine. Her work has been anthologized in several collections, including The Best Food Writing and The Best Creative Nonfiction. She is a former vice president of the National Book Critics Circle, and has taught nonfiction in the creative writing programs at the University of Memphis and the University of Pittsburgh, and science journalism in New York University’s Science, Health, and Environmental Reporting Program. She blogs about science, life, and writing at Culture Dish, hosted by Seed magazine. This is her first book. For more information, visit her website at RebeccaSkloot.com.
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