Here Is a Human Being (41 page)

1.
E. Phillips and S. Mallal, “Successful translation of pharmacogenetics into the clinic: The Abacavir example,”
Molecular Diagnosis & Therapy,
2009, 13(1): 1–9.

2.
J. Lazarou, B. H. Pomeranz, and P. N. Corey, “Incidence of adverse drug reactions in hospitalized patients: A meta-analysis of prospective studies,”
JAMA,
1998, 279(15): 1200–5.

3.
C. Elliott, “Guinea-pigging: Healthy human subjects for drug-safety trials are in demand. But is it a living?”
New Yorker,
January 7, 2008, p. 36.

4.
S. D. Warren and L. D. Brandeis, “The right to privacy,”
Harvard Law Review,
1890, 4(5).

5.
R. Rao, “Genes and spleens: Property, contract, or privacy rights in the human body?”
Journal of Law, Medicine & Ethics,
2007, 35(3): 371–82.

6.
Interview with William Catalona, June 9, 2008.

7.
www.circare.org/lex/03cv01065_pltfposthearingreply.pdf.

8.
J. R. Minkel, “Uninformed consent,”
Scientific American,
2006, 295(4): 22, 24.

9.
Interview with William Catalona, June 9, 2008.

10.
http://vlex.com/vid/catalona-mcgurk-wilard-parron-missios-37825718.

11.
T. Herrmann, “8th circuit rules Washington University has ownership of medical research,”
Kansas City (Missouri) Daily Record,
June 21, 2007.

12.
J. Ritter, “Who owns your body,”
Chicago Sun-Times,
September 17, 2007.

13.
Interview with William Catalona, June 9, 2008.

14.
Ibid.

15.
Email from William Catalona, October 22, 2009.

16.
Interview with Hank Greely, December 6, 2007.

17.
Interview with Amy McGuire, June 15, 2007.

18.
Interview with Hank Greely, December 6, 2007.

19.
http://grants.nih.gov/grants/gwas/town_hall_mtg/index.htm.

20.
H. Skaletsky, T. Kuroda-Kawaguchi, P. J. Minx, et al., “The male-specific region of the human Y chromosome is a mosaic of discrete sequence classes,”
Nature,
2003, 423(6942): 825–37.

21.
T. Francis, “Medical dilemma: Spread of records stirs patient fears of privacy erosion,”
Wall Street Journal,
December 26, 2006.

22.
Email from George Church, January 4, 2007.

23.
Interview with George Church, February 9, 2007.

24.
Email from George Church, March 1, 2007.

25.
E. Check, “Celebrity genomes alarm researchers,”
Nature,
2007, 447(7143): 358–59.

26.
D. M. Pressel, “Nuremberg and Tuskegee: Lessons for contemporary American medicine,”
Journal of the National Medical Association,
2003, 95(12): 1216–25.

27.
D. Micklos and E. Carlson, “Engineering American society: The lesson of eugenics,”
Nature Reviews Genetics,
2000, 1(2): 153–58.

28.
C. Hunt-Grubbe, “The elementary DNA of Dr Watson,”
Sunday Times
(of London), October 14, 2007.

29.
J. D. Watson,
The Double Helix: A Personal Account of the Discovery of the Structure of DNA
(London: Weidenfeld & Nicolson, 1968).

30.
http://nobelprize.org/nobel_prizes/medicine/laureates/1962/.

31.
J. Kim, J. M. Basak, and D. M. Holtzman, “The role of apolipoprotein E in Alzheimer’s disease,”
Neuron,
2009, 63(3): 287–303.

32.
J. D. Watson,
The Double Helix: A Personal Account of the Discovery of the Structure of DNA,
1st ed. (New York: Atheneum, 1968).

33.
"An intellectual entente,”
Harvard Magazine,
September 10, 2009.

34.
S. Connor, “James Watson, Nobel Prize winner: Welcome to the Watson wonderland,”
Independent
(U.K.), February 3, 2003.

35.
J. D. Watson,
Recombinant DNA: Genes and Genomes: A Short Course,
3rd ed. (New York: W. H. Freeman and Cold Spring Harbor Laboratory Press, 2007).

36.
D. A. Wheeler, M. Srinivasan, M. Egholm, et al., “The complete genome of an individual by massively parallel DNA sequencing,”
Nature,
2008, 452(7189): 872–76.

37.
E. Singer, “The $2 million genome,”
Technology Review,
June 1, 2007.

38.
K. Davies, “Project Jim: Watson’s genome goes public,”
Bio-IT World,
June 13, 2007.

39.
Interview with Michael Egholm, May 9, 2007.

40.
Interview with Amy McGuire, May 9, 2007.

41.
http://biologos.org/news-events/francis-collins-talks-biologos-with-christianity-today/.

42.
http://biologos.org/about.

43.
http://meetings.cshl.edu/ … /2007%20Past%20Programs/Genome%20 Program.pdf.

44.
N. Mekel-Bobrov, S. L. Gilbert, P. D. Evans, et al., “Ongoing adaptive evolution of ASPM, a brain size determinant in Homo sapiens,”
Science,
2005, 309(5741): 1720–22.

45.
Interview with James Watson, May 11, 2007.

46.
Interview with George Church, February 9, 2007.

47.
Interview with James Watson, May 11, 2007.

48.
Ibid.

49.
Remarks by James Watson to Biology of Genomes Meeting, Cold Spring Harbor Laboratory, May 11, 2007.

50.
Interview with Ting Wu, July 17, 2007.

51.
Interview with George Church, April 2, 2007.

52.
http://thepersonalgenome.com/category/genetics-profession/.

53.
Interview with George Church, June 6, 2007.

54.
S. M. Wolf, F. P. Lawrenz, C. A. Nelson, et al., “Managing incidental findings in human subjects research: Analysis and recommendations,”
Journal of Law, Medicine & Ethics,
2008, 36(2): 219–48, 211.

55.
J. Murphy, J. Scott, D. Kaufman, G. Geller, L. LeRoy, and K. Hudson, “Public expectations for return of results from large-cohort genetic research,”
American Journal of Bioethics,
2008, 8(11): 36–43.

56.
Interview with George Church, October 25, 2006.

57.
Ibid.

58.
Interview with George Church, February 9, 2007.

59.
Interview with Marie Wu, July 17, 2007

60.
http://www.thepersonalgenome.com.

61.
www.genome.duke.edu/press/genomelife/ … /GL_MarApr07.pdf.

CHAPTER 4: “BUT WHEN IS IT MATURE?”

1.
Interview with Matt Crenson, December 5, 2007

2.
http://spittoon.23andme.com/2008/02/22/23andmore-paternal-ancestry-free-demo-accounts-and-an-expanded-gene-journal/.

3.
https://www.23andme.com/you/health/.

4.
http://www.techcrunch.com/2008/01/22/1000-free-23andme-kits-for-davos-attendees-plus-one-for-techcrunch-readers/.

5.
https://www.23andme.com/gen101/variation/buffett/.

6.
http://spittoon.23andme.com/2008/06/16/haplogroups-of-the-rich-and-famous/; http://www.flickr.com/photos/edyson/2228962004/

7.
https://www.23andme.com/pregnancy/.

8.
G. Y. Tanaka,
Digital Deflation: The Productivity Revolution and How It Will Ignite the Economy
(New York: McGraw-Hill, 2004).

9.
R. Osborne, “Perlegen signs AstraZeneca, plus two deals with Pfizer,”
Bio-World Today,
January 12, 2004.

10.
B. M. Neale and S. Purcell, “The positives, protocols, and perils of genome-wide association,”
American Journal of Medical Genetics: Part B: Neuropsychiatric Genetics,
2008, 147B(7): 1288–94.

11.
Interview with Linda Avey, December 5, 2007.

12.
Ibid.

13.
Ibid.

14.
Ibid.

15.
http://www.wired.com/wiredscience/2009/03/science-as-seer/.

16.
Interview with Linda Avey, December 5, 2007.

17.
K. Pattison, “Spit party,”
Fast Company,
April 7, 2008.

18.
Interview with Dietrich Stephan, December 4, 2007.

19.
Ibid.

20.
Ibid.

21.
Ibid.

22.
https://www.navigenics.com/visitor/about_us/press/releases/company_launch_110607/.

23.
Interview with Dietrich Stephan, December 4, 2007.

24.
S. R. Browning, “Missing data imputation and haplotype phase inference for genome-wide association studies,”
Human Genetics,
2008, 124(5): 439–50.

25.
Interview with Elissa Levin, December 4, 2007.

26.
http://www.decodeme.com/faq.

27.
https://www.23andme.com/you/faqwin/professionals/.

28.
http://www.dnadirect.com/web/labs/genetic-counseling-services.

29.
K. Davies, “Pathway Genomics joins the direct-to-consumer genomics parade,”
Bio-IT World,
July 15, 2009.

30.
K. Davies, “Al Gore helps Navigenics launch personal genomics service,”
Bio-IT World,
April 9, 2008.

31.
P. McGeehan, “On the retail frontier, another shop in SoHo for the person who has everything,”
New York Times,
April 13, 2008.

32.
Interview with Tara Matise, April 15, 2008.

33.
National Society of Genetic Counselors Professional Status Survey, 2008, http://www.nsgc.org/career/pss_index.cfm.

34.
Interview with Deb McDermott, April 15, 2008.

35.
Interview with Dietrich Stephan, April 16, 2008.

36.
"Ready or not,”
Nature,
2008, 452: 666.

37.
Interview with Dietrich Stephan, April 16, 2008.

38.
R. Langreth and M. Herper, “States crack down on online gene tests,”
Forbes,
April 18, 2008.

39.
Interview with Dietrich Stephan, April 16, 2008.

40.
T. Ray, “Will other states follow NY, Calif., in taking on DTC genetic-testing firms?”
Pharmacogenomics Reporter,
June 25, 2008.

41.
R. Langreth, “California orders stop to gene testing,”
Forbes,
June 14, 2008.

42.
http://www.hhs.gov/news/press/2002pres/20021223a.html.

43.
http://archiver.rootsweb.ancestry.com/th/read/GENEALOGY-DNA/2008-02/1203878218.

44.
http://www.scheidecker.net/personal-genome-explorer/.

45.
K. Offit, “Genomic profiles for disease risk: Predictive or premature?”
Journal of the American Medical Association,
2008, 299(11): 1353–55; “Direct-to-consumer genetic tests: Flawed and unethical,”
Lancet Oncology,
2008, 9(12): 1113; H. J. Bandelt, Y. G. Yao, M. B. Richards, and A. Salas, “The brave new era of human genetic testing,”
Bioessays,
2008, 30(11–12): 1246–51; W. G. Feero, A. E. Guttmacher, and F. S. Collins, “The genome gets personal—almost,”
Journal of the American Medical Association,
2008, 299(11): 1351–52.

46.
G. B. van Ommen and M. C. Cornel, “Recreational genomics? Dreams and fears on genetic susceptibility screening,”
European Journal of Human Genetics,
2008, 16(4): 403–4.

47.
Email from Linda Avey, March 16, 2009.

48.
D. J. Hunter, M. J. Khoury, and J. M. Drazen, “Letting the genome out of the bottle—will we get our wish?”
New England Journal of Medicine,
2008, 358(2): 105–7.

49.
http://oba.od.nih.gov/oba/SACGHS/meetings/july2008/transcripts/08JULfullday.pdf.

50.
http://meetings.cshl.edu/meetings/pastprograms/2008%20Past%20Pro grams/Genome%20Program.pdf.

51.
http://oba.od.nih.gov/SACGHS/sacghs_past_meeting_2008_jul_08.html.

52.
K. Seligman, “The social entrepreneur,”
San Francisco Chronicle,
January 8, 2006.

53.
Interview with Ryan Phelan, December 5, 2007.

54.
Ibid.

55.
http://talk.dnadirect.com/2008/06/14/dna-direct-in-full-compliance-with-state-and-national-regulations/.

56.
http://oba.od.nih.gov/oba/SACGHS/meetings/july2008/transcripts/08JUL fullday.pdf.

57.
Ibid.

58.
Jim Evans at SACGHS meeting, July 8, 2008.

59.
http://oba.od.nih.gov/oba/SACGHS/meetings/july2008/transcripts/08JUL fullday.pdf.

60.
http://genomecommons.org/background/.

61.
S. Levy, G. Sutton, P. C. Ng, et al., “The diploid genome sequence of an individual human,”
PLoS Biology,
2007, 5(10): e254.

62.
Conversation with Steve Brenner, June 10, 2008.

63.
Conversation with Hugh Rienhoff and Linda Avey, June 10, 2008.

64.
G. Naik and A. Regalado, “A fitness mogul, stricken by illness, hunts for genes,”
Wall Street Journal,
November 30, 2006.

65.
http://www.alsforums.com/facts.php.

66.
Naik and Regalado, “A fitness mogul.”

67.
Email from Dietrich Stephan, February 19, 2008.

68.
Interview with Linda Avey, December 5, 2007.

69.
Email from Dietrich Stephan, February 19, 2008.

70.
Interview with George Church, December 6, 2007.

71.
http://www.knome.com/about/news/20071127.html.

72.
Interview with Stacey Gabriel, February 7, 2008.

73.
Interview with Pardis Sabeti, April 15, 2008.

74.
Interview with Tara Matise, April 15, 2008.

75.
Email from Jason Bobe, March 1, 2008.

CHAPTER 5: BETTER LIVING THROUGH CHEMISTRY

1.
C. A. Hutchison, “DNA sequencing: Bench to bedside and beyond,”
Nucleic Acids Research,
2007, 35(18): 6227–37.