The Immortal Life Of Henrietta Lacks Part 44

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. 12 (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. (8956302).

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 ent.i.ties," 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 ent.i.ty 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 ent.i.ty.

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 coauth.o.r.ed 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 Hopkins. "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' ident.i.ties. 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 ident.i.ty 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 ent.i.ty," 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): 15181521; 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. 873393) 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. 897787); United States of America v. Keenan Kester Cofield (No. 915957); Cofield v. the Henrietta Lacks Health History Foundation, Inc., et al. (CV-9733934); United States of America v. Keenan Kester Cofield (995417); 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 Silc.o.c.k, "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, G.o.ddess 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 doc.u.mented in "Maryland's Shame," a series by Howard M. Norton in the Baltimore Sun (January 919, 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/28/200406281151428297r/#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 a.s.sociation 274, no. 22 (December 13, 1995): 18067, and resulting letters to the editor; The Stored Tissue Issue: Biomedical Research, Ethics, and Law in the Era 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 (785024); Greenberg v. Miami Children's Hospital Research Inst.i.tute (264 F.Supp.2d 1064); Steven York v. Howard W. Jones et al. (89373-N); The Washington University v. William J. Catalona, M.D., et al. (CV-01065 and 062301); Tilousi v. Arizona State University Board of Re gents (04-CV-1290); Metabolite Laboratories, Inc., and Compet.i.tive Technologies, Inc., v. Laboratory Corporation of America Holdings (031120); a.s.sociation for Molecular Pathology et al. v. United States Patent and Trademark Office; Myriad Genetics et al. (case doc.u.ments 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.