by Masha Gessen
For an elucidation on Judaism’s position on genetics, see Fred Rosner, “Judaism, genetic screening and genetic therapy,” available online through the Jewish Virtual Library, http://www.jewishvirtuallibrary.org/jsource/Judaism/genetic.html (accessed September 13, 2007).
The prevalence of my mutation among non-Ashkenazi Jews and the dating of the founder: Revital Bruchim Bar-Sade, Anna Kruglikova, Baruch Modan, Eva Gak, Galit Hirsh-Yechezkel, Livia Theodor, Ilya Novikov, Ruth Gershoni-Baruch, Shulamit Risel, Moshe Z. Papa, Gilad Ben-Baruch, Eitan Friedman, “The 185delAG BRCA1 mutation originated before the dispersion of Jews in the Diaspora and is not limited to Ashkenazim,” Human Molecular Genetics 5 (May 1998): 801–805.
On the prevalence of a BRCA1 mutation in U.S. Hispanics and the fact that it shares a founder haplotype with the Ashkenazi mutation: J. N. Weitzel, V. Lagos, K. R. Blazer, R. Nelson, C. Ricker, J. Herzog, C. McGuire, S. Neuhausen, “Prevalence of BRCA mutations and founder effect in high-risk Hispanic families,” Cancer Epidemiology Biomarkers & Prevention 7 (July 2005): 1666–1671. This study reports that not all carriers of this mutation have the “Ashkenazi” haplotype: D. B. Berman, J. Wagner-Costalas, D. C. Schultz, H. T. Lynch, M. Daly, A. K. Godwin, “Two distinct origins of a common BRCA1 mutation in breast-ovarian cancer families: A genetic study of 15 185delAG-mutation kindreds,” American Journal of Human Genetics 6 (June 1996): 1166–1176.
CHAPTER 2: THE FOUR MOTHERS OF JEWS
This paper explains why my risk of developing cancer would have gone down if I had discovered that my mutation came from the side of the family unaffected by cancer: J. M. Satagopan, K. Offit, W. Foulkes, M. E. Robson, S. Wacholder, C. M. Eng, S. E. Karp, C. B. Begg, “The lifetime risks of breast cancer in Ashkenazi Jewish carriers of BRCA1 and BRCA2 mutations,” Cancer Epidemiology Biomarkers & Prevention 5 (May 2001): 467–473.
Carrier frequency for “my” mutation among Ashkenazi Jews: B. B. Roa, A. A. Boyd, K. Volcik, C. S. Richards, “Ashkenazi Jewish population frequencies for common mutations in BRCA1 and BRCA2,” Nature Genetics 2 (October 1996): 185–187.
Studies showing that exercise and weight modify the risk of cancer in mutation carriers: M. C. King, J. H. Marks, J. B. Mandell, The New York Breast Cancer Study Group, “Breast and ovarian cancer risks due to inherited mutations in BRCA1 and BRCA2,” Science, October 24, 2003, 643–646; Joanne Kotsopoulos, Olufunmilayo I. Olopade, Parviz Ghadirian, Jan Lubinski, Henry T. Lynch, Claudine Isaacs, Barbara Weber, Charmaine Kim-Sing, Peter Ainsworth, William D. Foulkes, Andrea Eisen, Ping Sun, and Steven A. Narod, “Changes in body weight and the risk of breast cancer in BRCA1 and BRCA2 mutation carriers,” Breast Cancer Research 5 (2005): R833–843.
This paper discusses increased risk of other cancers in BRCA mutation carriers: B. Friedenson, “BRCA1 and BRCA2 pathways and the risk of cancers other than breast or ovarian,” Medscape General Medicine 2 (June 2005).
On Judaism’s position on marrying epileptics, see Rosner, “Judaism, genetic screening and genetic therapy.” My great-uncle’s decision not to get married may have been unjustified because it seems unlikely that his form of epilepsy was heritable: No one else in the family had similar symptoms. Epilepsy is a condition that can be caused by a great many factors, including injuries, infections, and genetics.
For definitions of “Jewish diseases,” see, for example, the Web site of the Center for Jewish Genetic Diseases at the Mount Sinai School of Medicine, http://www.mssm.edu/jewish_genetics/genetic_diseases.shtml (accessed September 13, 2007).
The study suggesting that Jews are so sickly because they are so smart: Gregory Cochran, Jason Hardy, Henry Harpending, “Natural history of Ashkenazi intelligence,” Journal of Biosocial Science 5 (September 2006): 659–693. Steven Pinker commented on the paper in “Grops and Genes,” New Republic, June 26, 2006. For a review of work on the genetic basis for intelligence see Ian J. Deary, Frank M. Spinath, and Timothy C. Bates, “Genetics of intelligence,” European Journal of Human Genetics 14 (June 2006): 690–700. Joseph Jacobs wrote on “germ-plasm” in Joseph Jacobs, Jewish Contributions to Civilization: An Estimate (Philadelphia: Jewish Publication Society in America, 1919), quoted according to Yuri Slezkine, The Jewish Century (Princeton and Oxford: Princeton University Press, 2004).
The Cohanim studies: Michael F. Hammer, Karl Skorecki, Sara Selig, Shraga Blazer, Bruce Rappaport, Robert Bradman, Neil Bradman, P. J. Waburton, Monic Ismajlowicz, “Y chromosomes of Jewish priests,” Nature 385 (January 2, 1997): 32; Mark Thomas, Karl Skorecki, Haim Ben-Amid, Tudor Parfitt, Neil Bradman, David Goldstein, “Origins of Old Testament priests,” Nature 394 (July 9, 1998): 138–140.
On the Lemba: Mark G. Thomas, Tudor Parfitt, Deborah A. Weiss, Karl Skorecki, James F. Wilson, Magdel le Roux, Neil Bradman, and David B. Goldstein, “Y chromosomes traveling south: The Cohen modal haplotype and the origins of the Lemba, the ‘Black Jews of Southern Africa,’” American Journal of Human Genetics 66 (February 2000): 674–686; Paul Brodwin, “Genetics, identity, and the anthropology of essentialism,” Anthropological Quarterly 2 (Spring 2002): 323–330; Tudor Parfitt, Yulia Egorova, “Genetics, history, and identity: The case of the Bene Israel and the Lemba,” Culture, Medicine and Psychiatry 2 (June 2005): 193–224.
Marina Faerman, Gila Kahila Bar-Gal, Patricia Smith, Charles Greenblatt, Lawrence Stager, Dvora Filon, Ariella Oppenheim, “DNA analysis reveals the sex of infanticide victims,” Nature, January 16, 1997, 212–213; Marina Faerman, Gila Kahila Bar-Gal, Dvora Filon, Charles Greenblatt, Lawrence Stager, Ariella Oppenheim, Patricia Smith, “Determining the sex of infanticide victims from the late Roman Era through ancient DNA analysis,” Journal of Archaeological Science 25 (September 1998): 861–865.
Marina Faerman, Almut Nebel, Dvora Filon, Mark Thomas, Neil Bradman, Bruce Ragsdale, Michael Schultz, Ariella Oppenheim, “From a dry bone to a genetic portrait: A case study of sickle cell anemia,” American Journal of Physical Anthropology 2 (February 2000): 153–163.
On beta-thalassemia: Dvora Filon, Marina Faerman, Patricia Smith, Ariella Oppenheim, “Sequence analysis reveals a beta-thalassemia mutation in the DNA of skeletal remains from the archaelogical site of Akhziv, Israel,” Nature Genetics 9 (April 1995): 365–368; Tina Martino, Feige Kaplan, Stanley Diamond, Ariella Oppenheim, Charles Shriver, “Probable identity by descent and discovery of familial relationships by means of a rare beta-thalassemia haplotype,” Human Mutation 1 (September 1997): 86–87; Deborah Rund, Tirza Cohen, Dvora Filon, Carol Dowling, Tina Warren, Igal Barak, Eliezer Rachmilewitz, Haig Kazazian, Ariella Oppenheim, “Evolution of a genetic disease in an ethnic isolate: Beta-thalassemia in the Jews of Kurdistan,” Proceedings of the National Academy of Sciences, USA, January 1991: 310; Dvora Filon, Varda Oron, Svetlana Krichevski, Avraham Shaag, Yechezkel Shaag, Tina Warren, Ada Goldfarb, Yona Shneor, Ariel Koren, Mehmet Aker, Ayala Abramov, Eliezer Rachmilewitz, Deborah Rund, Haig Kazazian, Jr., Ariella Oppenheim, “Diversity of beta-globin mutations in Israeli ethnic groups reflects recent historic events,” American Journal of Human Genetics 5 (May 1994): 836–843; A. Koren, L. Zalman, H. Palmor, E. Ekstein, Y. Schneour, A. Schneour, S. Shalev, E. A. Rachmilewitz, D. Filon, A. Oppenheim,”The prevention programs for beta thalassemia in the Jezreel and Eiron valleys: Results of fifteen years experience,” Harefuah 11 (November 2002): 938–943.
Almut Nebel, Dvora Filon, Bernd Brinkmann, Partha Majumder, Marina Faerman, Ariella Oppenheim, “The Y chromosome pool of Jews as part of the genetic landscape of the Middle East,” American Journal of Human Genetics 69 (November 2001): 1095–1112.
Doron Behar, Mark Thomas, Karl Skorecki, Michael Hammer, Ekaterina Bulygina, Dror Rosengarten, Abigail Jones, Karen Held, Vivian Moses, David Goldstein, Neil Bradman, Michael Weale, “Multiple origins of Ashkenazi Levites: Y chromosome evidence for both Near Eastern and European ancestries,” American Journal of Human Genetics 73 (March 2003): 768–779.
D. M. Behar, E. Metspalu, T. Kivisild, A. Achilli, Y. Hadid, S. Tzur, L. Pereira, A. Amorim, L. Quin
tana-Murci, K. Majamaa, C. Herrnstadt, N. Howell, O. Balanovsky, I. Kutuev, A. Pshenichnov, D. Gurwitz, B. Bonne-Tamir, A. Torroni, R. Villems, K. Skorecki, “The matrilineal ancestry of Ashkenazi Jewry: portrait of a recent founder event,” American Journal of Human Genetics 78 (March 2006): 487–497.
Amy Harmon, “Love You, K2a2a, Whoever You Are,” New York Times, January 22, 2006.
Bryan Sykes, The Seven Daughters of Eve: The Science that Reveals Our Genetic Identity (New York and London: W. W. Norton and Co., 2001).
The estimate of the number of clients of commercial DNA ancestry tests: Harmon
DNAPrint Genomics, Inc., annual report (Form 10-KSB/A) filed with the U.S. Securities and Exchange Commission for 2004; Form 10QSB filed by DNAPrint Genomics for the first quarter of 2006.
Tony Frudakis, “Powerful but requiring caution: Genetic tests of ancestral origins,” National Genealogical Society Quarterly 93 (December 2005): 260–268.
On drug reactions: L. Slordal, O. Spigset, “Heart failure induced by non-cardiac drugs,” Drug Safety, July 2006, 567–586; A. Holdcroft, “UK drug analysis prints and anaesthetic adverse drug reactions,” Pharmacoepidemiology and Drug Safety 16 (March 2007): 316–328.
M. Gregg Bloche, “Race-based therapeutics,” New England Journal of Medicine 351 (November 11, 2004): 2035–2037; Anne L. Taylor, MD, Jay N. Cohn, MD, “A-HeFT: African-American heart failure trial,” presented at the American Heart Association 2004 Annual Scientific Sessions, http://www.medscape.com/viewarticle/494186 (accessed September 14, 2007).
CHAPTER 3: THE POST-NAZI ERA
Materials of the museum at Spiegelgrund available at http://www.spiegelgrund.at (accessed September 14, 2007). Additional information comes from: Herwig Czech, “Research without scruples: The scientific utilization of patients of the Nazi Psychiatric Murders in Vienna,” and Herwig Czech, “From welfare to selection: Vienna’s public health office and the implementation of racial hygiene policies under the Nazi regime,” both papers supplied by the author in manuscript form.
Brigitte Hamann, Thomas Thornton (translator), Hitler’s Vienna: A Dictator’s Apprenticeship (Oxford: Oxford University Press, 2000).
Robert N. Proctor, Racial Hygiene: Medicine Under the Nazis (Cambridge and London: Harvard University Press, 1998).
Johann Gross tells the story of his childhood and internment in Johann Gross, Spiegelgrund: Leben in NS-Erziehungsanstalten (Vienna: Verlag Carl Ueberreuter, 2000).
Robert N. Proctor, The Nazi War on Cancer (Princeton and Oxford: Princeton University Press, 1999).
Edwin Black, War Against the Weak: Eugenics and America’s Campaign to Create a Master Race (New York and London: Four Walls Eight Windows, 2003).
Robert Jay Lifton, The Nazi Doctors: Medical Killing and the Psychology of Genocide (New York: BasicBooks, 1986).
Daniel J. Kevles, In the Name of Eugenics: Genetics and the Uses of Human Heredity (Cambridge and London: Harvard University Press, 1985).
Calvin Coolidge, “Whose Country is This?” Good Housekeeping 72 (February 1921): 14.
The ban on genetics in the Soviet Union is described in Valery Soyfer, Leo Gruliow, Rebecca Gruliow, Lysenko and the Tragedy of Soviet Science (Piscataway, NJ: Rutgers University Press, 1994).
The level of popular support for the idea of “Russia for the Russians” was measured by the Levada Center between 1998 and 2006. In that period the percentage of Russian residents supporting the idea grew from 46 to 54 percent. http://www.levada.ru/press/2006082500.html (accessed October 10, 2007).
On the correlation of the number of cigarettes smoked and lung cancer: N. S. Godtfredsen, E. Prescott, M. Osler, “Effect of smoking reduction on lung cancer risk,” Journal of the American Medical Association 294 (September 2005): 1505–1510.
CHAPTER 4: INDECISION
Pakistani study: Alexander Liede, Imtiaz A. Malik, Zeba Aziz, Patricia de los Rios, Elaine Kwan, and Steven A. Narod, “Contribution of BRCA1 and BRCA2 mutations to breast and ovarian cancer in Pakistan,” American Journal of Human Genetics 71 (September 2002): 595–606.
Risk of breast cancer: Lynn C. Hartmann, MD, Thomas A. Sellers, Ph.D., Marlene H. Frost, Ph.D., Wilma L. Lingle, Ph.D., Amy C. Degnim, MD, Karthik Ghosh, MD, Robert A. Vierkant, MAS, Shaun D. Maloney, BA, V. Shane Pankratz, Ph.D., David W. Hillman, MS, Vera J. Suman, Ph.D., Jo Johnson, RN, Cassann Blake, MD, Thea Tlsty, Ph.D., Celine M. Vachon, Ph.D., L. Joseph Melton III, MD, and Daniel W. Visscher, MD, “Benign breast disease and the risk of breast cancer,” New England Journal of Medicine 353 (July 21, 2005): 229–237.
The incidence of breast cancer in the United States rose by 4.1 percent between 1975 and 1992 while mortality from breast cancer dropped by 2.3 percent (the statistics are even more dramatic for white people: a rise of 4.3 percent and a drop of 2.4 percent). For ovarian cancer, however, both incidence and mortality fluctuated very little, which is to say, nothing really changed. L. A. G. Ries, M. P. Eisner, C. L. Kosary, B. F. Hankey, B. A. Miller, L. Clegg, A. Mariotto, E. J. Feuer, B. K. Edwards (eds). “SEER Cancer Statistics Review, 1975–2002,” National Cancer Institute, Bethesda, MD, http://seer.cancer.gov/csr/1975_2002/ (accessed September 13, 2007).
Deaths from ovarian cancer: G. Tortolero-Luna, M. F. Mitchell, “The epidemiology of ovarian cancer,” Journal of Cellular Biochemistry–Supplement S23 (1995): 200–207.
Janet Hobhouse, The Furies (New York: NYRB Classics, 2004).
CHAPTER 5: A DECISION AT ANY COST
Daniel Kahneman’s Nobel lecture, “Maps of Bounded Rationality: A Perspective on Intuitive Judgment and Choice,” given December 8, 2002, http://nobelprize.org/economics/laureates/2002/kahnemann-lecture.pdf (accessed September 13, 2007).
The eBay.com experiment is described in Tanjim Hossain and John Morgan, “A test of the revenue equivalence theorem using field experiments on eBay,” a working paper, http://emlab.berkeley.edu/users/webfac/dellavigna/e218_f03/morgan.pdf (accessed September 13, 2007).
There are two studies by Andrew Caplin and John Leahy. The conclusion that doctors mishandle information comes from “The supply of information by a concerned expert,” Economic Journal, July 2004, 487–505. They focus on instances of choosing not to know and propose a model for measuring the usefulness of obtaining information about a possible stressful outcome in “Psychological expected utility theory and anticipatory feelings,” The Quarterly Journal of Economics 116 (February 2001): 55–79.
The Berkeley study is Botond Köszegi, “Health anxiety and patient behavior,” Journal of Health Economics, November 2003, 1073–1084.
The terms “monitors” and “blunters” are introduced in S. M. Miller, C. E. Mangan, “Interacting effects of information and coping style in adapting to gynecologic stress: Should the doctor tell all?” Journal of Personality and Social Psychology 45 (July 1983): 223–236.
The two studies that conclude that women are likely to want to know whether they carry one of the BRCA mutations are: Lisa Soleymani Lehmann, Jane C. Weeks, Neil Klar, Judy Garber, “A population-based study of Ashkenazi Jewish women’s attitudes toward genetic discrimination and BRCA1/2 testing,” Genetics in Medicine 4 (September/October 2002): 346–352; and Ilan Yaniv, Deborah Benador, Michal Sagi, “On not wanting to know and not wanting to inform others: Choices regarding predictive genetic testing,” Risk Decision and Policy 9 (September 2004): 317–336.
The Georgetown study: C. Lerman, C. Hughes, S. J. Lemon, D. Main, C. Snyder, C. Durham, S. Narod, H. T. Lynch, “What you don’t know can hurt you: Adverse psychologic effects in members of BRCA1-linked and BRCA2-linked families who decline genetic testing,” Journal of Clinical Oncology 16 (May 1998): 1650–1654.
Nancy Etcoff, Survival of the Prettiest: The Science of Beauty (New York: Anchor Books, 2000).
David Lykken and Auke Tellegen, “Happiness is a stochastic phenomenon,” Psychological Science 7 (May 1996): 186–189.
Studies of what makes people happy: Ed Diener, Eunkook Suh, Shigehiro Oishi, “Recent findings on subjective well-bei
ng,” Indian Journal of Clinical Psychology, (March 1997): 25–41; D. M. Smith, K. M. Langa, M. U. Kabeto, P. A. Ubel, “Health, wealth, and happiness,” Psychological Science 16 (September 2005): 663–666.
On recovering from disfiguring accidents: N. E. Van Loey, M. J. Van Son, “Psychopathology and psychological problems in patients with burn scars: Epidemiology and management,” American Journal of Clinical Dermatology 4 (April 2003): 245–272.
Mastectomy studies: P. Hopwood, A. Lee, A. Shenton, A. Baildam, A. Brain, F. Lalloo, G. Evans, A. Howell, “Clinical follow-up after bilateral risk reducing (‘prophylactic’) mastectomy: Mental health and body image outcomes,” Psychooncology 9 (November—December 2000): 462–472; Mal Bebbington Hatcher, Leslie Fallowfield, Roger A’Hern, “The psychological impact of bilateral prophylactic mastectomy: Prospective study using questionnaires and semistructured interviews,” British Medical Journal 332 (January 13, 2001): 76; Michael Stefanek, Lynn Hartmann, Wendy Nelson, “Risk-reduction mastectomy: Clinical issues and research needs,” Journal of the National Cancer Institute 93 (September 15, 2001): 1297–1306.
The history and practice of hysterectomies in the United States are described in Christiane Northrup, Women’s Bodies, Women’s Wisdom: Creating Physical and Emotional Health and Healing (New York: Bantam Books, 1998); and The Boston Women’s Health Book Collective, The New Our Bodies, Ourselves (New York: Simon and Schuster, 1992).
Unnecessary oophorectomies leading to early death: W. H. Parker, M. S. Broder, Z. Liu, D. Shoupe, C. Farquhar, J. S. Berek, “Ovarian conservation at the time of hysterectomy for benign disease,” Obstetrics & Gynecology 106 (August 2005): 219–226.
