“effectively, the patent claimed”: Luigi Palombi, Gene Cartels: Biotech Patents in the Age of Free Trade (London: Edward Elgar Publishing, 2009), 264.
Many newspapers accusingly termed it: “History of AIDS up to 1986,” http://www.avert.org/history-aids-1986.htm.
In April, exactly two years: Gilbert C. White, “Hemophilia: An amazing 35-year journey from the depths of HIV to the threshold of cure,” Transactions of the American Clinical and Climatological Association 121 (2010): 61.
90 percent would acquire HIV: “HIV/AIDS,” National Hemophilia Foundation, https://www.hemophilia.org/Bleeding-Disorders/Blood-Safety/HIV/AIDS.
Of the several million variants: John Overington, Bissan Al-Lazikani, and Andrew Hopkins, “How many drug targets are there?” Nature Reviews Drug Discovery 5 (December 2006): 993–96, “Table 1 | Molecular targets of FDA-approved drugs,” http://www.nature.com/nrd/journal/v5/n12/fig_tab/nrd2199_T1.html.
On October 14, 1980, Genentech sold: “Genentech: Historical stock info,” Gene.com, http://www.gene.com/about-us/investors.
In the summer of 2001, Genentech launched: Harold Evans, Gail Buckland, and David Lefer, They Made America: From the Steam Engine to the Search Engine—Two Centuries of Innovators (London: Hachette UK, 2009), “Hebert Boyer and Robert Swanson: The biotech industry,” 420–31.
PART FOUR: “THE PROPER STUDY OF MANKIND IS MAN”
Know then thyself: Alexander Pope, Essay on Man (Oxford: Clarendon Press, 1869).
Albany: How have you known: William Shakespeare and Jay L. Halio, The Tragedy of King Lear (Cambridge: Cambridge University Press, 1992), act 5, sc. 3.
The Birth of a Clinic
I start with the premise that: Lyon and Gorner, Altered Fates.
the New York Times published: John A. Osmundsen, “Biologist hopeful in solving secrets of heredity this year,” New York Times, February 2, 1962.
“The most important contribution to medicine”: Thomas Morgan, “The relation of genetics to physiology and medicine,” Nobel Lecture, June 4, 1934, Nobelprize.org, http://www.nobelprize.org/nobel_prizes/medicine/laureates/1933/morgan-lecture.html.
In 1947, Victor McKusick: “From ‘musical murmurs’ to medical genetics, 1945–1960,” Victor A. McKusick Papers, NIH, http://profiles.nlm.nih.gov/ps/retrieve/narrative/jq/p-nid/305.
McKusick described the case: Harold Jeghers, Victor A. McKusick, and Kermit H. Katz, “Generalized intestinal polyposis and melanin spots of the oral mucosa, lips and digits,” New England Journal of Medicine 241, no. 25 (1949): 993–1005, doi:10.1056/nejm194912222412501.
In 1899, Archibald Garrod: Archibald E. Garrod, “A contribution to the study of alkaptonuria,” Medico-chirurgical Transactions 82 (1899): 367.
“The phenomena of obesity”: Archibald E. Garrod, “The incidence of alkaptonuria: A study in chemical individuality,” Lancet 160, no. 4137 (1902): 1616–20, doi:10.1016/s0140-6736(01)41972-6.
for decades, some medical historians: Harold Schwartz, Abraham Lincoln and the Marfan Syndrome (Chicago: American Medical Association, 1964).
By the mid-1980s, McKusick and his students: J. Amberger et al., “McKusick’s Online Mendelian Inheritance in Man,” Nucleic Acids Research 37 (2009): (database issue) D793–D796, fig. 1 and 2, doi:10.1093/nar/gkn665.
By the twelfth edition of his book: “Beyond the clinic: Genetic studies of the Amish and little people, 1960–1980s,” Victor A. McKusick Papers, NIH, http://profiles.nlm.nih.gov/ps/retrieve/narrative/jq/p-nid/307.
“The imperfect is our paradise”: Wallace Stevens, The Collected Poems of Wallace Stevens (New York: Alfred A. Knopf, 1954), “The Poems of Our Climate,” 193–94.
In November 1961: Fantastic Four #1 (New York: Marvel Comics, 1961), http://marvel.com/comics/issue/12894/fantastic_four_1961_1.
“a fantastic amount of radioactivity”: Stan Lee et al., Marvel Masterworks: The Amazing Spider-Man (New York: Marvel Publishing, 2009), “The Secrets of Spider-Man.”
the X-Men, launched in September 1963: Uncanny X-Men #1 (New York: Marvel Comics, 1963), http://marvel.com/comics/issue/12413/uncanny_x-men_1963_1.
in the spring of 1966: Alexandra Stern, Telling Genes: The Story of Genetic Counseling in America (Baltimore: Johns Hopkins University Press, 2012), 146.
Fetal cells from the amnion: Leo Sachs, David M. Serr, and Mathilde Danon, “Analysis of amniotic fluid cells for diagnosis of foetal sex,” British Medical Journal 2, no. 4996 (1956): 795.
On May 31, 1968: Carlo Valenti, “Cytogenetic diagnosis of down’s syndrome in utero,” Journal of the American Medical Association 207, no. 8 (1969): 1513, doi:10.1001/jama.1969.03150210097018.
In September 1969: Details of McCorvey’s life are from Norma McCorvey with Andy Meisler, I Am Roe: My Life, Roe v. Wade, and Freedom of Choice (New York: Harper-Collins, 1994).
“with dirty instruments scattered around the room”: Ibid.
Blackmun wrote: Roe v. Wade, Legal Information Institute, https://www.law.cornell.edu/supremecourt/text/410/113.
“The individual’s [i.e., mother’s]”: Alexander M. Bickel, The Morality of Consent (New Haven: Yale University Press, 1975), 28.
control of the fetal genome to medicine: Jeffrey Toobin, “The people’s choice,” New Yorker, January 28, 2013, 19–20.
In some states: H. Hansen, “Brief reports decline of Down’s syndrome after abortion reform in New York State,” American Journal of Mental Deficiency 83, no. 2 (1978): 185–88.
By the mid-1970s: Daniel J. Kevles, In the Name of Eugenics: Genetics and the Uses of Human Heredity (New York: Alfred A. Knopf, 1985), 257.
“Tiny fault after tiny fault”: M. Susan Lindee, Moments of Truth in Genetic Medicine (Baltimore: Johns Hopkins University Press, 2005), 24.
McKusick published a new edition: V. A. McKusick and R. Claiborne, eds., Medical Genetics (New York: HP Publishing, 1973).
Joseph Dancis, the pediatrician, wrote: Ibid., Joseph Dancis, “The prenatal detection of hereditary defects,” 247.
In June 1969, a woman named Hetty Park: Mark Zhang, “Park v. Chessin (1977),” The Embryo Project Encyclopedia, January 31, 2014, https://embryo.asu.edu/pages/park-v-chessin-1977.
One commentator noted, “The court asserted”: Ibid.
“Interfere, Interfere, Interfere”
After millennia in which most people: Gerald Leach, “Breeding Better People,” Observer, April 12, 1970.
No newborn should be declared human: Michelle Morgante, “DNA scientist Francis Crick dies at 88,” Miami Herald, July 29, 2004.
“The old eugenics was limited”: Lily E. Kay, The Molecular Vision of Life: Caltech, the Rockefeller Foundation, and the Rise of the New Biology (New York: Oxford University Press, 1993), 276.
In 1980, Robert Graham: David Plotz, “Darwin’s Engineer,” Los Angeles Times, June 5, 2005, http://www.latimes.com/la-tm-spermbank23jun05-story.html#page=1.
The physicist William Shockley: Joel N. Shurkin, Broken Genius: The Rise and Fall of William Shockley, Creator of the Electronic Age (London: Macmillan, 2006), 256.
“cruel, blundering and inefficient”: Kevles, In the Name of Eugenics, 263.
“moral obligation of the medical profession”: Departments of Labor and Health, Education, and Welfare Appropriations for 1967 (Washington, DC: Government Printing Office, 1966), 249.
“Near the end of his terms of office”: Victor McKusick, in Legal and Ethical Issues Raised by the Human Genome Project: Proceedings of the Conference in Houston, Texas, March 7–9, 1991, ed. Mark A. Rothstein (Houston: University of Houston, Health Law and Policy Institute, 1991).
“needle in a haystack”: Matthew R. Walker and Ralph Rapley, Route Maps in Gene Technology (Oxford: Blackwell Science, 1997), 144.
A Village of Dancers, an Atlas of Moles
Glory be to God for dappled things: W. H. Gardner, Gerard Manley Hopkins: Poems and Prose (Taipei: Shu lin, 1968), “Pied Beauty.”
We suddenly came upon two women: George Huntington, “Recollections of
Huntington’s chorea as I saw it at East Hampton, Long Island, during my boyhood,” Journal of Nervous and Mental Disease 37 (1910): 255–57.
In 1978, two geneticists: Robert M. Cook-Deegan, The Gene Wars: Science, Politics, and the Human Genome (New York: W. W. Norton, 1994), 38.
By studying Mormons in Utah: K. Kravitz et al., “Genetic linkage between hereditary hemochromatosis and HLA,” American Journal of Human Genetics 31, no. 5 (1979): 601.
When Botstein and Davis had first discovered: David Botstein et al., “Construction of a genetic linkage map in man using restriction fragment length polymorphisms,” American Journal of Human Genetics 32, no. 3 (1980): 314.
The poet Louis MacNeice once wrote: Louis MacNeice, “Snow,” in The New Cambridge Bibliography of English Literature, vol. 3, ed. George Watson (Cambridge: Cambridge University Press, 1971).
In 1978, two other researchers: Y. Wai Kan and Andree M. Dozy, “Polymorphism of DNA sequence adjacent to human beta-globin structural gene: Relationship to sickle mutation,” Proceedings of the National Academy of Sciences 75, no. 11 (1978): 5631–35.
“We can give you markers”: Victor K. McElheny, Drawing the Map of Life: Inside the Human Genome Project (New York: Basic Books, 2010), 29.
“We describe a new basis”: Botstein et al., “Construction of a genetic linkage map,” 314.
“like watching a giant puppet show”: Marlene Cimons, “It’s all in the family: As doctors study the mysteries of cancer and other deadly diseases, families may turn out to be the best laboratory,” Los Angeles Times, February 10, 1991.
“waiting game for the onset of symptoms”: “New discovery in fight against Huntington’s disease,” NUI Galway, February 22, 2012, http://www.nuigalway.ie/about-us/news-and-events/news-archive/2012/february2012/new-discovery-in-fight-against-huntingtons-disease-1.html.
“I don’t know the point where”: Gene Veritas, “At risk for Huntington’s disease,” September 21, 2011, http://curehd.blogspot.com/2011_09_01_archive.html.
Milton Wexler, Nancy’s father, a psychiatrist: Details of the Wexler family story came from Alice Wexler, Mapping Fate: A Memoir of Family, Risk, and Genetic Research (Berkeley: University of California Press, 1995); Lyon and Gorner, Altered Fates; and “Makers profile: Nancy Wexler, neuropsychologist & president, Hereditary Disease Foundation,” MAKERS: The Largest Video Collection of Women’s Stories, http://www.makers.com/nancy-wexler.
“Each one of you has a one-in-two”: Ibid.
That year, Milton Wexler launched: “History of the HDF,” Hereditary Disease Foundation, http://hdfoundation.org/history-of-the-hdf/.
Leonore died on May 14, 1978: Associated Press, “Milton Wexler; Promoted Huntington’s Research,” Washington Post, March 23, 2007, http://www.washingtonpost.com/wp-dyn/content/article/2007/03/22/AR2007032202068.html.
Seventeen months later, in October 1979: Wexler, Mapping Fate, 177.
“There have been a few times in my life”: Ibid., 178.
At first glance, a visitor to Barranquitas: Description of Barranquitas from “Nancy Wexler in Venezuela Huntington’s disease,” BBC, 2010, YouTube, https://www.youtube.com/watch?v=D6LbkTW8fDU.
When the Venezuelan neurologist Américo Negrette: M. S. Okun and N. Thommi, “Américo Negrette (1924 to 2003): Diagnosing Huntington disease in Venezuela,” Neurology 63, no. 2 (2004): 340–43, doi:10.1212/01.wnl.0000129827.16522.78.
“It was a clash of total bizarreness”: Jerry E. Bishop and Michael Waldholz, Genome: The Story of the Most Astonishing Scientific Adventure of Our Time (New York: Simon & Schuster, 1990), 82–86.
In August 1983, Wexler and Gusella: James F. Gusella et al., “A polymorphic DNA marker genetically linked to Huntington’s disease,” Nature 306, no. 5940 (1983): 234–38, doi:10.1038/306234a0.
The candidate gene had been found: Karl Kieburtz et al., “Trinucleotide repeat length and progression of illness in Huntington’s disease,” Journal of Medical Genetics 31, no. 11 (1994): 872–74.
“We’ve got it, we’ve got it”: Lyon and Gorner, Altered Fates, 424.
A remarkable feature of the inheritance: Nancy S. Wexler, “Venezuelan kindreds reveal that genetic and environmental factors modulate Huntington’s disease age of onset,” Proceedings of the National Academy of Sciences 101, no. 10 (2004): 3498–503.
In 1857, a Swiss almanac: The Almanac of Children’s Songs and Games from Switzerland (Leipzig: J. J. Weber, 1857).
“Inside the pericardium”: “The History of Cystic Fibrosis,” cysticfibrosismedicine.com, http://www.cfmedicine.com/history/earlyyears.htm.
In 1985, Lap-Chee Tsui: Lap-Chee Tsui et al., “Cystic fibrosis locus defined by a genetically linked polymorphic DNA marker,” Science 230, no. 4729 (1985): 1054–57.
By the spring of 1989, Collins: Wanda K. Lemna et al., “Mutation analysis for heterozygote detection and the prenatal diagnosis of cystic fibrosis,” New England Journal of Medicine 322, no. 5 (1990): 291–96.
Over the last decade: V. Scotet et al., “Impact of public health strategies on the birth prevalence of cystic fibrosis in Brittany, France,” Human Genetics 113, no. 3 (2003): 280–85.
In 1993, a New York hospital: D. Kronn, V. Jansen, and H. Ostrer, “Carrier screening for cystic fibrosis, Gaucher disease, and Tay-Sachs disease in the Ashkenazi Jewish population: The first 1,000 cases at New York University Medical Center, New York, NY,” Archives of Internal Medicine 158, no. 7 (1998): 777–81.
As the physicist and historian Evelyn Fox Keller: Elinor S. Shaffer, ed., The Third Culture: Literature and Science, vol. 9 (Berlin: Walter de Gruyter, 1998), 21.
“a new horizon in the history of man”: Robert L. Sinsheimer, “The prospect for designed genetic change,” American Scientist 57, no. 1 (1969): 134–42.
“Some may smile and may feel”: Jay Katz, Alexander Morgan Capron, and Eleanor Swift Glass, Experimentation with Human Beings: The Authority of the Investigator, Subject, Professions, and State in the Human Experimentation Process (New York: Russell Sage Foundation, 1972), 488.
“no beliefs, no values, no institutions”: John Burdon Sanderson Haldane, Daedalus or Science and the Future (New York: E. P. Dutton, 1924), 48.
“To Get the Genome”
Our ability to read out this sequence: Sulston and Ferry, Common Thread, 264.
In 1977, when Fred Sanger had sequenced: Cook-Deegan, The Gene Wars, 62.
The human genome contains 3,095,677,412 base pairs: “OrganismView: Search organisms and genomes,” CoGe: OrganismView, https://genomevolution.org/coge/OrganismView.pl.
BRCA1, was only identified in 1994: Yoshio Miki et al., “A strong candidate for the breast and ovarian cancer susceptibility gene BRCA1,” Science 266, no. 5182 (1994): 66–71.
such as chromosome jumping: F. Collins et al., “Construction of a general human chromosome jumping library, with application to cystic fibrosis,” Science 235, no. 4792 (1987): 1046–49, doi:10.1126/science.2950591.
“There was no shortage of exceptionally clever”: Mark Henderson, “Sir John Sulston and the Human Genome Project,” Wellcome Trust, May 3, 2011, https://blog.wellcome.ac.uk/2011/05/05/75th-stories-sir-john-sulston-and-the-human-genome-project/.
“But even with the immense power”: Departments of Labor, Health and Human Services, Education, and Related Agencies Appropriations for 1996: Hearings before a Subcommittee of the Committee on Appropriations, House of Representatives, One Hundred Fourth Congress, First Session (Washington, DC: Government Printing Office, 1995), http://catalog.hathitrust.org/Record/003483817.
in 1872, Hilário de Gouvêa, a Brazilian ophthalmologist: Alvaro N. A. Monteiro and Ricardo Waizbort, “The accidental cancer geneticist: Hilário de Gouvêa and hereditary retinoblastoma,” Cancer Biology & Therapy 6, no. 5 (2007): 811–13, doi:10.4161/cbt.6.5.4420.
Vogelstein had already discovered that cancers: Bert Vogelstein and Kenneth W. Kinzler, “The multistep nature of cancer,” Trends in Genetics 9, no. 4 (1993): 138–41.
Schizophrenia, in pa
rticular, sparked a furor: Valrie Plaza, American Mass Murderers (Raleigh, NC: Lulu Press, 2015), “Chapter 57: James Oliver Huberty.”
NAS study found that identical twins possessed: “Schizophrenia in the National Academy of Sciences–National Research Council Twin Registry: A 16-year update,” American Journal of Psychiatry 140, no. 12 (1983): 1551–63, doi:10.1176/ajp.140.12.1551.
An earlier study, published by: D. H. O’Rourke et al., “Refutation of the general single-locus model for the etiology of schizophrenia,” American Journal of Human Genetics 34, no. 4 (1982): 630.
For identical twins with the severest form: Peter McGuffin et al., “Twin concordance for operationally defined schizophrenia: Confirmation of familiality and heritability,” Archives of General Psychiatry 41, no. 6 (1984): 541–45.
Populist anxieties about genes, mental illness: James Q. Wilson and Richard J. Herrnstein, Crime and Human Nature: The Definitive Study of the Causes of Crime (New York: Simon & Schuster, 1985).
“bad friends, bad neighborhoods, bad labels”: Matt DeLisi, “James Q. Wilson,” in Fifty Key Thinkers in Criminology, ed. Keith Hayward, Jayne Mooney, and Shadd Maruna (London: Routledge, 2010), 192–96.
another meeting of scientists was called to evaluate whether: Doug Struck, “The Sun (1837–1988),” Baltimore Sun, February 2, 1986, 79.
The most important technical breakthrough: Kary Mullis, “Nobel Lecture: The polymerase chain reaction,” December 8, 1993, Nobelprize.org, http://www.nobelprize.org/nobel_prizes/chemistry/laureates/1993/mullis-lecture.html.
To sequence all 3 billion base pairs: Sharyl J. Nass and Bruce Stillman, Large-Scale Biomedical Science: Exploring Strategies for Future Research (Washington, DC: National Academies Press, 2003), 33.
“The only way to give Rufus a life”: McElheny, Drawing the Map of Life, 65.
By 1989 after several: “About NHGRI: A Brief History and Timeline,” Genome.gov, http://www.genome.gov/10001763.
In January 1989, a twelve-member council: McElheny, Drawing the Map of Life, 89.
“We are initiating an unending study”: Ibid.