Chapter 3: Genetic Control
For further information regarding Case Presentation: Genae Girard and Gene Patents, see
David Jessop and Ashley Grossman, “The Discovery of Adrenaline,” Brain Immune, July 26, 2009; Michael
Specter, “Can We Patent Life?” The New Yorker, April 1, 2013; Mildred K. Cho, Samantha Illangasekare et
al., “Effects of Patents and Licenses on the Provision of Clinical Genetic Testing,” J. Mol. Diagn. 5, no. 1
(2003): 3–8; Subhashini Chandrasekharan, Emily Pitlick, Christopher Heaney, and Robert Cook-Deegan,
“Impact of Gene Patents and Licensing Practices on Access to Genetic Testing for Hereditary
Hemochromatosis,” Genet. Med. 12, no. 4 suppl. (2010): S155–S170; Subhashini Chandrasekharan,
Christopher Heaney, Tamara James, Chris Conover, and Robert Cook-Deegan, “Impact of Gene Patents
and Licensing Practices on Access to Genetic Testing for Cystic Fibrosis,” Genetics in Medicine 12 (2010):
S194–S211, doi:10.1097/GIM.0b013e3181d7cf7d; T. Walsh, S. Casadei et al., “Spectrum of Mutations in
Further background information can be found in: Elizabeth Landau, “How Human Genes Become
Patented” CNN (13 May 2009); Robert Cook-Deegan, “Gene Patents,” The Hastings Center Briefing Book;
Sharon Begley, “In Surprise Ruling, Court Declares Two Gene Patents Invalid,” Newsweek, March 29,
2010; Susan Decker and Thom Weidlich, “Myriad Loses Ruling over Breast Cancer–Gene Patents”
Businessweek, March 29 2010; and the following New York Times articles: John Schwarz, “Cancer
Patients Sue Testing Company and Government Over Gene Patents” May 31, 2009; John Schwartz and
Social Context: The Promise of Precision Medicine made use of the following sources: Office of
the Press Secretary, “Fact Sheet: President Obama’s Precision Medicine Initiative,” The White House,
January 30, 2015; Jocelyn Kaiser, “Obama Gives East Room Rollouy to Precision Medicine Initiative,”
Science, January 30, 2015; Editorial Board, “Medicine Just for You,” The New York Times, February 7,
2015; Gina Kolata, “A Path for Precision Medicine,” The New York Times, February 2, 2015; Eric T.
Juengst, Micharl A. Flatt, and Richard A. Settersten, Jr., “Personalized Genomics and the Rhetoric of
Patient Empowerment,” Hastings Center Report 42, no. 5 (2012): 34–40; Francis S. Collins and Harold
Varmus, “A New Initiative on Precision Medicine,” The New England Journal of Medicine 372 (2015): 793–
795, doi: 10.1056/NEJMp1500523; Michael J. Joyner, “‘Moonshot’ Medicine Will Let Us Down,” The New
York Times, January 29, 2015; Carl Zimmer, “In Iceland’s DNA, New Clues to Disease–Causing Genes,”
Case Presentation: The CRISPR Revolution draws extensively on: David Baltimore, Paul Berg,
Michael Botchan, Dana Carroll, R. Alta Charo, George Church, Jacob E. Corn, George Q. Daley, Jennifer
A. Doudna, Marsha Fenner, Henry T. Greely, Martin Jinek, G. Steven Martin, Edward Penheot, Jennifer
Puck, Samuel H. Sternberg, Jonathan S. Weissman, and Keith R. Yamamoto, “A Prudent Path Forward for
Genomic Engineering and Germline Gene Modification,” Science 348, no. 6230 (2015): 36–38. Also see:
Nicholas Wade, “Scientists Seek Ban on Method of Editing the Human Genome,” The New York Times,
March 19, 2015; Edward Lanphier, Fyodor Urnov et al., “Don’t Edit the Human Germ Line,” Nature 519, no.
7544 (2015): 410–411; Hao Yin, Wen Xue et al., “Genome Editing with Cas9 in Adult Mice Corrects a
Disease Mutation and Phenotype,” Nature Biotechnology 32 (2014): 551–553, doi:10.1038/nbt.2884; Carl
Case Presentation: Testing for Genetic Disease Risk relies on Angelina Jolie, “My Medical
Choice,” The New York Times, May 14, 2013; Sandeep Jauhar, “ ‘The Patient Will See You Now,’ by Eric
Topol,” The New York Times, February 13, 2015; Erika Check Hayden, “Gene Counsellors Expect
Resurgence of ‘Jolie Effect,’ ” Nature, March 26, 2015; Justin Wm. Moyer, “Dueling Studies: The ‘Angelia
Jolie Effect’ Is Influencing Women Fighting Cancer—but the Influence May Not Do Much Good,” The
Washington Post, September 3, 2014; Diane Mapes, “The Angeline Jolie Effect: One Year Later,” Fred
Hutch News Service, May 14, 2014; Mary Engel, “Quantifying the ‘Angelina Jolie Effect,’ ” Fred Hutch News
Service, September 18, 2014; Angelina Jolie Pitt, “Angelina Jolie Pitt: Diary of a Surgery,” The New York
Statesman, January 9, 2010; and Tara Parker-Pope, “After Cancer, Removing a Healthy Breast,” The New
York Times, March 9, 2010.
For discussion of direct-to-consumer genetic testing, see the following New York Times articles:
Nicholas Wade, “Experts Advise a Grain of Salt with Mail–Order Genomes, at $1,000 a Pop,” November 17,
2007; Gina Kolata, “$300 to Learn Risk of Cancer of the Prostate,” January 17, 2008; Robert Pear, “Growth
of Genetic Tests Concerns Federal Panel,” January 18, 2008; and Jane E. Brody, “Buyer Beware of At–
Home Genetic Tests,” September 1, 2009. Also see Andrew Pollack’s New York Times articles on this
Arguments summarized in Social Context: Prenatal Genetic Testing can be found in Evelyne
Shuster, “Microarray Genetic Screening: A Prenatal Roadblock for Life?” Lancet, 369 (2007): 526–9; and P.
Mallia and Henk ten Have, “From What Should We Protect Future Generations: Germ-Line Therapy or
Genetic Screening?” Medicine, Health Care & Philosophy 6, no. 1 (2003):17–24. See also: Amy Harmon,
“Genetic Testing + Abortion = ???” The New York Times, May 13, 2007; “Prenatal Test Puts Down
Syndrome in Hard Focus,” The New York Times, May 9, 2007, as well as letters in response, “To Raise a
Case Presentation: Huntington’s Disease relies on Gina Kolata, “Closing in on a Killer Gene,”
Discover, March 1984, 83–87 and Albert Rosenfeld, “At Risk for Huntington’s Disease: Who Should Know
What and When?” Hastings Center Report 14 (June 1984): 5–8. See also the following New York Times
articles: Sandra Blakeslee, “Unusual Clues Help in Long Fight to Solve Huntington’s Disease,” October 27,
Case Presentation: The Threat of Genetic Discrimination draws on David U. Himmelstein,
Elizabeth Warren, Deborah Thorne, and Steffie Woolhandler, “MarketWatch: Illness and Injury as
Contributors to Bankruptcy,” Health Affairs, February 2005, doi:10.1377/hlthaff.w5.63; Diana Wagman,
“Night Terrors of the Uninsured,” Los Angeles Times, July 6, 2013; K. Pollitz, B. N. Peshkin, E. Bangit, K.
Lucia, “Genetic Discrimination in Health Insurance: Current Legal Protections and Industry Practices,”
Inquiry 44, no. 3 (2007): 350–368; David Schultz, “It’s Legal for Some Insurers to Discriminate Based on
Genes,” NPR, January 17, 2013; Robert C. Green, Denise Lautenbach, and Amy L. McGuire, “GINA,
For further background information, see also: Amy Harmon, “Fear of Insurance Trouble Leads
Many to Shun or Hide DNA Tests,” The New York Times, February 24, 2008; and letters in response:
“When DNA and Insurance Collide,” The New York Times, March 2, 2008. Also see: Amy Harmon,
Case Presentation: Gene Therapy draws on Eve K. Nicholas, Human Gene Therapy
(Cambridge, Mass.: Harvard University Press, 1988). The plan to initiate ADA gene therapy is described in
Natalie Angier, “Gene Implant Therapy,” The New York Times, March 8, 1990, and her account of the first
case is in “Girl, 4, Becomes First Human to Receive Engineered Genes,” September 15, 1990.
Biographical details of Ashanthi Desilva and additional treatments are reported in Larry Thompson, “The
First Kids with New Genes,” Time, June 7, 1993. The first case, as well as plans for future ones, is
discussed in W. French Anderson, “Human Gene Therapy,” Science May 8, 1992, 808–813. An excellent
review of the ethical issues is Leroy Walters and Julie Gage Palmer, Ethics of Human Gene Therapy (New
York: Oxford University Press, 1996). For the adverse events in France, see “Gene Tampering,” Time
Social Context: The Humane Genome Project draws from the following New York Times articles
by Nicholas Wade: “Genetic Code of Human Life is Cracked by Scientists,” June 27, 2000; “Big Stride for
Researchers in Human Gene Mapping,” March 15, 1997; “Genome’s Riddle,” February 13, 2001; “Now the
Hard Part: Putting the Genome to Work,” June 27, 2000; “Quest for the $1000 Human Genome,” July 18,
2006); “$10 Million Prize Set Up for Speedy DNA Decoding,” October 5, 2006; “Genome of DNA Discoverer
Social Context: Stem Cells draws on the following New York Times articles and reporters: from
Gina Kolata: “Embryonic Cells, No Embryo Needed,” October 11, 2005; “Scientists Bypass Need for
Embryo to Get Stem Cells,” November 21, 2007; and “Researcher Who Helped Start Stem Cell War May
Now End It,” November 2007; from Nicholas Wade: “Harvard Scientists Report a Stem-Cell Advance”
August 23, 2005; “Biologists Make Skin Cells Work Like Stem Cells” June 7, 2007; “In New Method for
Stem Cells, Viable Embryos” August 24, 2007; “Researchers Report Advances in Cell Conversion
Technique” August 28, 2008; “Rethink Stem Cells? Science Already Has,” March 10, 2009; and “13 New
Stem Cell Lines Open to Research,” June 3 2009; and from Andrew Pollack: “After Stem-Cell
Breakthrough, the Real Work Begins,” November 27, 2007; and “Milestone in Research in Stem Cells,”
January 23, 2009. Information on the politics of the debate comes from the following New York Times
articles: from Sheryl Gay Stolberg: “G.O.P. Lawmakers Offer Alternative Bill on Stem Cells,” July 12, 2005;
On doubts about the effectiveness of somatic cells in treatment, see Nicholas Wade, “Stem Cell
Treatment for Heart Attack Falters,” The New York Times, March 1, 2006. For basic information, see
National Institutes of Health, “Stem Cells: A Primer.” For the therapeutic possibilities of stem cells, see
Ronald Munson, Raising the Dead: Organ, Transplants, Ethics, and Society (New York: Oxford University
Press, 2002), Chapter 11, “Grow Your Own Organs: Stem-Cell Engineering and Regenerative Medicine.”
Updates to the 10th Edition version of this Social Context are based on Ronald M. Green, “The
Stem-Cell Debate,” NOVA Online, November 2001; “Stem Cell Basics,” National Institutes of Health, March
5, 2015; “Nine Things to Know about Stem Cell Treatments,” A Closer Look at Stem Cells; Michael J.
Haller, Hilla-Lee Viener et al., “Autologous Umbilical Cord Blood Infusion for Type 1 Diabetes,” Exp.
Hematol. 36, no. 6 (2008): 710–715; Ada Ao, “First Stem Cell Drug to Market—Prochymal,” Scitable, May
The account of PKU screening in the Chapter 3 Briefing Session draws from National Academy
of Sciences, Genetic Screening: Programs, Principles, and Research (Washington, D.C.: National
Academy of Sciences, 1975). For an account of alpha-fetoprotein screening, see Barbara Gastel et al.,
eds., Maternal Serum Alpha Fetoprotein: Issues in the Prenatal Screening and Diagnosis of Neural Tube
Defects (U.S. Department of Health and Human Services Publication HE 20.2: M41, 1981). For social
problems caused by PKU laws and sickle-cell screening, see Philip Reilly, “There’s Another Side to Genetic
Screening,” Prism (January 1976): 55–57. Genetic screening and the problems it poses for rights is
considered by Susan West, “Genetic Testing on the Job,” Science 82 (September 1982): 16.
On genetic testing, see the following New York Times articles and reporters: from Sandra
Blakeslee, “Cause of Brain Cells’ Death in Seven Diseases Is Discovered,” August 8, 1997; from Nicholas
Wade: “Two Gene Discoveries Help Explain Misfires of Epilepsy in the Brain,” December 30, 1997; “Newly
On genetic disorders that worsen over generations, see Anastasia Toufexis, “The Generational
Saga of the Vicious Gene,” Time, February 17, 1992; and Gina Kolata, “Discovery Upsets Geneticists’
Ideas on Inherited Ills,” The New York Times, February 6, 1992. As background on genes affecting breast
cancer, see Rachel Nowa, “Breast Cancer Gene Offers Surprises,” Science, September 23, 1994: 1796–
1799; Gregory Cowley, “Family Matters: Hunt for a Breast Cancer Gene,” Newsweek, December 6, 1993;
Tim Hilchey, “Researchers Find Genetic Defect That Causes Rare Immune Disease,” April 9, 1993 and
Natalie Angier, “Gene Is Found That Causes Rare Type of Hypertension,” January 16, 1992; and from
Nicholas Wade, “Gene Identified as Risk Factor for Heart Ills,” May 4, 2007; “Scientists Find Genetic Link
for a Disorder,” July 19, 2007; and “Research Teams Identify Gene Seen as Tied to Multiple Sclerosis,”
July 30, 2007. See also: “Q&A: Gene therapy for Eyes,” BBC News Channel, May 1, 2007; Associated
Guidelines on sickle-cell testing are in Warren E. Leary, “Sickle-Cell Screen Urged for All
Newborns,” The New York Times, April 28, 1993; on treatments, see Leary’s “Intractable Pain of Sickle Cell
Begins to Yield,” The New York Times, June 7, 1994. Ethical issues about testing and children are
discussed in Gina Kolata’s, “Should Children Be Told If Genes Predict Illness?” The New York Times,