Am I My Genes?: Confronting Fate and Family Secrets in the Age of Genetic Testing 1st Edition

NOTES

CHAPTER 1

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3. Rothman, BK. The Book of Life: A Personal and Ethical Guide to Race, Normality and the Human Gene Study. Boston, MA: Beacon Press, 2001.

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12. Campos MA, Wanner A, Zhang G, et al. “Trends in the diagnosis of symptomatic patients with alpha-1-antitrypsin deficiency between 1968 and 2003.” Chest 128(3) (2005): 1179–1186.

13. Stolk J, Seersholm N, Kalsheker N. “Alpha-1 antitrypsin deficiency: current perspective on research, diagnosis, and management.” International Journal of Chronic Obstructive Pulmonary Disease 1(2) (2006): 151–160.

14. Stolk J. “Case detection of alpha-1 antitrypsin deficiency: does it help the patient or the doctor?” European Respiratory Journal 26(4) (2005): 561–652.

15. Sveger T, Thelin T, McNeil TF. “Neonatal Alpha-1 antitrypsin screening: parents’ views and reactions 20 years after the identification of the deficiency state.” Acta Paediatrica 88(3) (1999): 315–318.

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CHAPTER 2

1. Kessler S, Field T, Worth L, Mosbarger H. “Attitudes of persons at risk for Huntington disease toward predictive testing.” American Journal of Medical Genetics 26(2) (1987): 259–270.

2. Markel DS, Young AB, Penney JB. “At-risk persons’ attitudes toward presymptomatic and prenatal testing of Huntington disease in Michigan.” American Journal of Medical Genetics 26(2) (1987): 295–305.

3. Mastromauro C, Myers RH, Berkman B. “Attitudes toward presymptomatic testing in Huntington disease.” American Journal of Medical Genetics 26(2) (1987): 271–282.

4. Meissen GJ, Berchek RL. “Intended use of predictive testing by those at risk for Huntington disease.” American Journal of Medical Genetics 26(2) (1987): 283–293.

5. Creighton S, Almqvist EW, MacGregor D, et al. “Predictive, pre-natal and diagnostic genetic testing for Huntington’s disease: the experience in Canada from 1987 to 2000.” Clinical Genetics 63(6) (2003): 462–475.

6. Hayden M. “Predictive testing for Huntington’s disease: the calm after the storm.” The Lancet 356(9246) (2000): 1944–1945.

7. Cox SM. “Stories in decisions: how at-risk individuals decide to request predictive testing for Huntington disease.” Qualitative Sociology 26(2) (2003): 257–280.

8. Wexler NS. “Presymptomatic testing for Huntington’s disease: Harbinger for the new genetics.” In Bankowski Z, Caprons AM, eds. Genetics, Ethics and Human Values: Human Genome Mapping, Genetic Screening and Gene Therapy. Geneva, Switzerland: CIOMS, 1991.

9. Quaid K, Brandt J, Faden R, Folstein, S. “Knowledge, attitude, and the decision to be tested for Huntington’s disease.” Clinical Genetics 36(6) (1989): 431–438.

10. Evers-Kiebooms G, Decruyenaere M. “Predictive testing for Huntington’s disease: a challenge for persons at risk and for professionals.” Patient Education and Counseling 35(1) (1998): 15–26.

11. Meissen G, Mastromauro CA, Kiely DK, McNamara DS, Myers RH. “Understanding the decision to take the predictive test for Huntington disease.” American Journal of Medical Genetics 39(4) (1991): 404–410.

12. Robins-Wahlin TB, Backman L, Lundin A, Haegermark A, Winblad B, Anvert M. “High suicidal ideation in persons testing for Huntington’s disease.” Acta Neurologica Scandinavica. 102(3) (2000): 150–161.

13. Quaid K, Morris M. “Reluctance to undergo predictive testing: the case of Huntington disease.” American Journal of Medical Genetics 45(1) (1993): 41–45.

14. Baum A, Friedman AL, Zakowski SG. “Stress and genetic testing for disease risk.” Health Psychology 16(1) (1997): 8–19.

15. Struewing JP, Lerman C, Kase RG, Giambarresi TR, Tucker MA. “Anticipated uptake and impact of genetic testing in hereditary breast and ovarian cancer families.” Cancer Epidemiology, Biomarkers & Prevention 4(2) (1995): 169–173.

16. Brunger JW, Murray GS, O’Riordan M, Matthews AL, Smith RJH, Robin NH. “Parental attitudes toward genetic testing for pediatric deafness.” American Journal of Human Genetics 67(6) (2000): 1621–1625.

17. Lerman C, Hughes C, Trock BJ, et al. “Genetic testing in families with hereditary nonpolyposis colon cancer.” The Journal of the American Medical Association 281(17) (1999): 1618–1622.

18. Jacobsen PB, Valdimarsdottir HB, Brown KL, Offit K. “Decision-making about genetic testing among women at familial risk for breast cancer.” Psychosomatic Medicine 59(5) (1997): 459–466.

19. Lerman C, Narod S, Schulman K, et al. “BRCA1 testing in families with hereditary breast-ovarian cancer.” The Journal of the American Medical Association 275(24) (1996): 1885–1892.

20. Prochaska JO, DiClemente CC, Norcross JC. “In search of how people change: applications to addictive behavior.” American Psychologist 47(9) (1992): 1102–1114.

21. Houlihan GD. “The evaluation of the ‘stages of change’ model for use in counselling client’s undergoing predictive testing for Huntington’s disease.” Journal of Advanced Nursing 29(5) (1999): 1137–1143.

22. Taylor SD. “Predictive genetic test decisions for Huntington’s disease: elucidating the test/no-test dichotomy.” Journal of Health Psychology 10(4) (2005): 597–612.

23. Littell JH, Girvin H. “Stages of change: a critique.” Behavior Modification 26(2) (2002): 223–273.

24. Rosenstock IM, Strecher VJ, Becker MH. “Social learning theory and the health belief model.” Health Education Quarterly 15(2) (1988): 175–183.

25. Fang CY, Dunkel-Schetter C, Tatsugawa ZH, et al. “Attitudes toward genetic carrier screening for cystic fibrosis among pregnant women: the role of health beliefs and avoidant coping style.” Women’s Health 3(1) (1997): 31–51.

26. Folkman S, Lazarus RS. “An analysis of coping in a middle-aged community sample.” Journal of Health and Social Behavior 21(3) (1980): 219–239.

27. Gooding H, Organista K, Burack J, Bowles Biesecker B. “Genetic susceptibility testing from a stress and coping perspective.” Social Science & Medicine 62(8) (2006): 1880–1890.

28. Wilson TD. “On user studies and information needs.” Journal of Documentation 37(1) (1981): 3–15.

29. Miller SM. “Monitoring and blunting: validation of a questionnaire to assess styles of information seeking under threat.” Journal of Personal Social Psychology 52(2) (1987): 345–353.

30. Case DO, Andrews JE, Johnson JD, Allard S. “Avoiding versus seeking: the relationship of information seeking to avoidance, blunting, coping, dissonance and related concepts.” Journal of the Medical Library Association93(3) (2005): 48–57.

31. Shiloh S, Ben-Sinai R, Keinan G. “Effects of controllability, predictability, and information-seeking style on interest in predictive genetic testing.” Personality and Social Psychology Bulletin 25(10) (1999): 1187–1195.

32. Van Zuuren FJ, Wolfs HM. “Styles of information seeking under threat: personal and situational aspects of monitoring and blunting.” Personality and Individual Differences 12(2) (1991): 141–149.

33. Tversky A, Kahneman D. “The framing of decisions and the psychology of choice.” Science 211(4481) (1981): 453–458.

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37. Downing C. “Negotiating responsibility: case studies of reproductive decision-making and prenatal genetic testing in families facing Huntington’s disease.” Journal of Genetic Counseling 14(3) (2005): 219–234.

38. Sher C, Romano-Zelekha O, Green MS, Shohat T. “Factors affecting performance of prenatal genetic testing by Israeli Jewish women.” American Journal of Medical Genetics 120A(3) (2003): 418–422.

39. Freedman AN, Wideroff L, Olson L, Davis W, et al. “US physicians’ attitudes toward genetic testing for cancer susceptibility.” American Journal of Medical Genetics 120A(1) (2003): 63–71.

40. Cho MK, Sankar P, Wolpe PR, Godmilow L. “Commercialization of BRCA1/2 testing: Practitioner awareness and use of a new genetic test.” American Journal of Medical Genetics 83(3) (1999): 157–163.

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42. Meiser B, Dunn S. “Psychological impact of genetic testing for Huntington’s disease: an update of the literature.” Journal of Neurology, Neurosurgery & Psychiatry 69(5) (2000): 574–578.

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45. Tibben A, Duivenvoorden HJ, Vegter-van der Vlis M, et al. “Presymptomatic DNA testing for Huntington disease: identifying the need for psychological intervention.” American Journal of Medical Genetics 48(3) (1993): 137–144.

46. Decruyenaere M, Evers-Kiebooms G, Cloostermans T, et al. “Predictive testing for Huntington’s disease: relationship with partners after testing.” Clinical Genetics 65(1) (2004): 24–31.

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50. Sifri R, Myers R, Hyslop T, et al. “Use of cancer susceptibility testing among primary care physicians.” Clinical Genetics 64(4) (2003): 355–360.

51. Wideroff L, Freedman AN, Olson L, et al. “Physician use of genetic testing for cancer susceptibility: results of a national survey.” Cancer Epidemiology, Biomarkers & Prevention 12(4) (2003): 295–303.

52. Graham J, Maugh TH. “Mammogram guidelines spark heated debate.” Los Angeles Times. November 17, 2009. http://www.latimes.com/news/nationworld/nation/la-na-mammogram17-2009nov17,0,3942708.story. Accessed January 20, 2011.

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54. Aktan-Collan K, Mecklin JP, de la Chapelle A, Peltomäki P, Uutela A, Kääriäinen H. “Evaluation of a counselling protocol for predictive genetic testing for hereditary non-polyposis colorectal cancer.” Journal of Medical Genetics 37(2) (2000): 108–113.

55. Harper PS, Lim C, Craufurd D. “Ten years of presymptomatic testing for Huntington’s disease: the experiences of the UK Huntington’s Disease Prediction Consortium.” Journal of Medical Genetics37(8) (2000): 567–571.

56. Sermon K, De Rijcke M, Lissens W, et al. “Preimplantation genetic diagnosis for Huntington’s disease with exclusion testing.” European Journal of Human Genetics 10(10) (2002): 591–8.

57a. Simpson SA, Harper PS, United Kingdom Huntington’s Disease Prediction Consortium. “Prenatal testing for Huntington’s disease: experience within the UK 1994–1998.” Journal of Medical Genetics38(5) (2001): 333–335.

57b. Stern HJ, Harton GL, Sisson ME, et al. “Non-disclosing preimplantation genetic diagnosis for Huntington disease.” Prenatal Diagnosis 22(6) (2002): 503–507.

58. Forrest K, Simpson SA, Wilson BJ, et al. “To tell or not to tell: Barriers and facilitators in family communication about genetic risk.” Clinical Genetics 64(4) (2003): 317–326.

59. Evers-Kiebooms G, Welkenhuysen M, Claes E, Decruyenaere L. “The psychological complexity of predictive testing for late onset neurogenetic diseases and hereditary cancers: implications for multidisciplinary counseling and for genetic education.” Social Science & Medicine 51(6) (2000): 831–841.

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CHAPTER 3

1. Sobel S, Cowan D. “Impact of genetic testing for Huntington disease on the family system.” American Journal of Medical Genetics 90(1) (2000): 49–59.

2. Sorenson JR, Jennings-Grant T, Newman J. “Communication about carrier testing within hemophilia A families.” American Journal of Medical Genetics 119C(1) (2003): 3–10.

3. Green J, Richards M, Murton F, Statham H, Hallowell N. “Family communication and genetic counseling: the case of hereditary breast and ovarian cancer.” Journal of Genetic Counseling 6(1) (1997): 45–60.

4. Forrest Keenan K, Simpson SA, Wilson BJ, et al. “‘It’s their blood not mine’: who’s responsible for (not) telling relatives about genetic risk.” Health Risk and Society 7(3) (2005): 209–226.

5. Lerman C, Peshkin BN, Hughes C, Isaacs C. “Family disclosure in genetic testing for cancer susceptibility: determinants and consequences.” Journal of Health Care Law & Policy 1 (1998): 353–372.

6. Wilson BJ, Forrest Keenan K, van Teijingen ER, et al. “Family communication about genetic risk: the little that is known.” Community Genetics 7(1) (2004): 15–24.

7. Ayme S, Macquart-Moulin G, Julian-Reynier C, Chabal F, Giraud F. “Diffusion of information about genetic risk within families.” Neuromuscular Disorders 3(5-6) (1993): 511–514.

8. Suslak L, Price DM, Desposito F. “Transmitting balanced translocation information within families: a follow-up study.” American Journal of Medical Genetics 20(2) (1985): 227–232.

9. Julian-Reynier C, Eisinger F, Chabal F, et al. “Disclosure to the family of breast/ovarian cancer genetic test results: patient’s willingness and associated factors.” American Journal of Medical Genetics94(1) (2000): 13–18.

10. Fanos JH, Johnson JP. “Barriers to carrier testing for adult cystic fibrosis sibs: the importance of not knowing.” American Journal of Medical Genetics 59(1) (1995): 85–91.

11. Tercyak KP, Hughes C, Main D, Snyder C, Lynch JF, Lynch HT, et al. “Parental communication of BRCA 1/2 genetic test results to children.” Patient Education and Counseling 42(3) (2001): 213–224.

12. Tercyak KP, Peshkin BN, Tiffani A, et al. “Parent-child factors and their effect on communicating BRCA 1/2 test results to children.” Patient Education and Counseling 47(2) (2002): 145–153.

13. Hughes C, Lerman C, Schwartz M, et al. “All in the family: evaluation process and content of sisters’ communication about BRCA 1/2 genetic test results.” American Journal of Medical Genetics 107(2) (2002): 143–150.

14. Peterson SK. “The role of the family in genetic testing: Theoretical perspectives, current knowledge, and future directions.” Health Education & Behavior 32(5) (2005): 627–639.

15. Plantinga L, Natowicz M, Kass N, Chandros S, Gostin L, Faden R. “Disclosures, confidentiality, and families: experiences and attitudes of those with genetic versus nongenetic medical conditions.” American Journal of Medical Genetics 119C(1) (2003): 51–59.

16. Klitzman R. Being Positive: The Lives of Men and Women With HIV. Chicago: Ivan R. Dee, 1997.

17. Klitzman R, Bayer R. Mortal Secrets: Truth and Lies in the Age of AIDS. Baltimore, MD: Johns Hopkins University Press, 2003.

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19. Rosenstock IM, Strecher VJ, Becker MH. “Social learning theory and the health belief model.” Health Education Quarterly 15(2) (1988): 175–183.

20. Goffman E. StigmaNotes on the Management of Spoiled Identity. Englewood Cliffs, NJ: Prentice-Hall, 1963.

21. Parsons T. The Social System. London: Routledge and Kegan Paul, 1951.

22. Buckner F, Firestone M. “‘Where the public peril begins’: 25 years after Tarasoff.” The Journal of Legal Medicine 21(2) (2000): 187–222.

23. Offit K, Groeger E, Turner S, Wadsworth E, Weiser M. “The ‘duty to warn’ a patient’s family members about hereditary disease risks.” The Journal of the American Medical Association 292(12) (2004): 1469–1473.

24. Palner J, Mittelmark MB. “Differences between married and unmarried men and women in the relationship between perceived physical health and perceived mental health.” Norwegian Journal of Epidemiology 12(1) (2002): 55–61.

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26. Osborne C, Ostir GV, Du X, Peek MK, Goodwin JS. “The influence of marital status on the stage at diagnosis, treatment, and survival of older women with breast cancer.” Breast Cancer Research and Treatment 93(1) (2005): 41–47.

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36. D’agincourt-Canning L. “Experiences of genetic risk: disclosure and the gendering of responsibility.” Bioethics 15(3) (2001): 231–247.

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CHAPTER 4

1. Klitzman R, Daya S. “Challenges and changes in spirituality among doctors who become patients.” Social Science & Medicine 61(11) (2005): 2396–2406.

2. Klitzman R. When Doctors Become Patients. New York: Oxford University Press, 2008.

3. Kleinman A. The Illness Narratives: Suffering, Healing, & the Human Condition. New York: Basic Books, 1988.

4. Kuhn T. The Structure of Scientific Revolutions. Chicago, IL: University of Chicago Press, 1996.

5. Shiloh S, Rashuk-Rosenthal D, Benyamini Y. “Illness causal attributions: an exploratory study of their structure and associations with other illness cognitions and perceptions of control.” Journal of Behavioural Medicine25(4) (2002): 373–394.

6. Henderson BJ, Maguire BT. “Three lay mental models of disease inheritance.” Social Science & Medicine 5(2) (2000): 293–301.

7. Wulff H. “Comments on Hesslow’s ‘What is genetic disease?’” In L Nordenfelt, BIB Lindahl, eds., Health, Disease and Causal Explanations in Medicine. Dordrecht: D. Reidel, 1984: 195–197.

8. Weil J. “Mothers’ postcounseling beliefs about the causes of their children’s genetic disorders.” The American Journal of Human Genetics 48(1) (1991): 145–153.

9. Shiloh S. “Illness representations, self-regulation, and genetic counseling: a theoretical review” Journal of Genetic Counseling 15(5) (2006): 325–337.

10. Bottorff JL, Ratner PA, Johnson JL, Lovato CY, Joab SA. “Communicating cancer risk information: the challenges of uncertainty.” Patient Education and Counseling 33(1) (1998): 67–81.

11. Dekkers W, Rikkert MO. “What is a genetic cause? The example of Alzheimer’s disease.” Medicine, Health Care and Philosophy 9(3) (2006): 273–284.

12. Smith KC. “A disease by any other name: musings on the concept of a genetic disease.” Medicine, Health Care and Philosophy 4(1) 2001: 19–30.

13. Popper KR. The Logic of Scientific Discovery. London: Routledge, 2002.

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15. Farmer P. AIDS and Accusation: Haiti and the Geography of Blame (Comparative Studies of Health Systems and Medical Care). Berkeley, CA: University of California Press, 1993.

16. Phelan JC, Bromet EJ, Link BG. “Psychiatric illness and family stigma.” Schizophrenia Bulletin 24(1) (1998): 115–126.

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18. Pritchard D, Smith M. “The psychology and philosophy of luck.” New Ideas in Psychology 22(1) (2004): 1–28.

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23. Lawson KL. “Perceptions of deservedness of social aid as a function of prenatal diagnostic testing.” Journal of Applied Social Psychology 33(1) (2003): 76–90.

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25. Sivell S, Elwyn G, Gaff CL, et al. “How risk is perceived, constructed and interpreted by clients in clinical genetics, and the effects on decision-making: systematic review.” Journal of Genetic Counseling 17(1) (2008): 30–63.

26. Senior V, Marteau TM, Peters TJ. “Will genetic testing for predisposition for disease result in fatalism? A qualitative study of parents responses to neonatal screening for familial hypercholesterolaemia.” Society Science & Medicine 48(12) (1999): 1857–1860.

27. Santos S. “The diversity of everyday ideas about inherited disorders.” Public Understanding of Science 15(3) (2006): 259–275.

28. Gifford SM. “The meanings of lumps: a case study of the ambiguities of risk.” In Janes C, Stall R, Gifford SM, eds. Anthropology and Epidemiology: Interdisciplinary Approach to the Study of Health and Disease (Culture, Illness and Healing). Boston: Reidel, 1986.

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30. Parsons T. The Social System. London: Routledge and Kegan Paul, 1951.

CHAPTER 5

1. Klitzman R. Being Positive: The Lives of Men and Women With HIV. Chicago, IL: Ivan R. Dee, 1997.

2. Kleinman A. The Illness Narratives: Suffering, Healing, & the Human Condition. New York: Basic Books, 1988.

3. Shiloh S. “Illness representations, self-regulation, and genetic counseling: A theoretical review.” Journal of Genetic Counseling 15(5) (2006): 325–337.

4. Walter FM, Emery J. “‘Coming down the line’–patients’ understanding of their family history of common chronic disease.” Annals of Family Medicine 3(5) (2005): 405–414.

5. Riessman CK. “Performing identities in illness narrative: masculinity and multiple sclerosis.” Qualitative Research 3(1) (1988): 5–33.

6. Mathieson C, Stam H. “Renegotiating identity: cancer narratives.” Sociology of Health and Illness 17(3) (1995): 283–306.

7. Adams S, Pill R, Jone A. “Medication, chronic illness and identity: the perspective of people with asthma.” Social Science & Medicine 45(2) (1997): 198–201.

8. Scharloo M, Kaptein AA, Weinman J, et al. “Illness perceptions, coping and functioning in patients with rheumatoid arthritis, chronic obstructive pulmonary disease and psoriasis.” Journal of Psychosomatic Research44(5) (1998): 573–585.

9. Bradley EJ, Calvert E, Pitts MK, Redman CWE. “Illness identity and the self-regulatory model in recovery from early stage gynaecological cancer.” Journal of Health Psychology 6(5) (2001): 511–521.

10. Petrie KJ, Weinman J, Sharpe N, Buckley J. “Role of patients’ view of their illness in predicting return to work and functioning after myocardial infarction: longitudinal study.” British Medical Journal312(7040) (1996): 1191–1194.

11. Kelly M. “Self, identity and radical surgery.” Sociology of Health and Illness 14(3) (1992): 390–415.

12. McConkie-Rosell A, Spiridgliozzi G, Melvin E, Dawson DV, Lachiewicz AM. “Living with genetic risk: effect on adolescent self-concept.” American Journal of Medical Genetics Part C 148C(1) (2008): 56–69.

13. Zeiler K. “Who am I? When do ‘I’ become another? An analytic exploration of identities, sameness and difference, genes and genomes.” Health Care Analysis 15(1) (2007): 25–32.

14. Armstrong D, Michie S, Marteau T. “Revealed identity: a study of the process of genetic counseling.” Social Science & Medicine 47(11) (1998): 1653–1658.

15. Juengst ET. “FACE facts: why human genetics will always provoke bioethics.” Journal of Law, Medicine & Ethics 32(2) (2004): 267–275.

16. Elliott C, Brodwin P. “Identity and genetic ancestry tracing.” British Medical Journal 325(7378) (2002): 1469–1471.

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CHAPTER 6

1. Emery J, Watson E, Rose P, Andermann A. “A systematic review of the literature exploring the role of primary care in genetic services.” Family Practice 16(4) (1999): 426–445.

2. Walter FM, Emery J, Braithwaite D, Marteau TM. “Lay understanding of familial risk of common chronic diseases: a systematic review and synthesis of qualitative research.” Annals of Family Medicine2(6) (2004): 583–593.

3. Kessler L, Collier A, Hughes Halbert C. “Knowledge about genetics among African-Americans.” Journal of Genetic Counseling 16(2) (2007): 191–200.

4. DeVries H, Mesters I, van de Steeg H, Honing C. “The general public’s information needs and perceptions regarding hereditary cancer: an application of the integrated change model.” Patient Education and Counseling56(2) (2005): 154–165.

5. Lanie AD, Jayaratne TE, Sheldon JP, et al. “Exploring the public understanding of basic genetic concepts.” Journal of Genetic Counseling 13(4) (2004): 305–320.

6. Shaw A, Hurst JA. “‘What is this genetics, anyway?’ Understandings of genetics, illness causality and inheritance among British Pakistani users of genetic services.” Journal of Genetic Counseling 17(4) (2008): 373–383.

7. Condit CM, Dubriwny T, Lynch J, Parrott R. “Lay people’s understanding of and preference against the word ‘mutation.’” American Journal of Medical Genetics 130A(3) (2004): 245–250.

8. Shaw A, Hurst JA. “‘What is this genetics, anyway?’ Understandings of genetics, illness causality and inheritance among British Pakistani users of genetic services.” Journal of Genetic Counseling 17(4) (2008): 373–383.

9. Emslie C, Hunt K, Watt G. “A chip off the old block? Lay understandings of inheritance among men and women in mid-life.” Public Understanding of Science 12(1) (2003): 47–65.

10. Sivell S, Elwyn G, Gaff CL, et al. “How risk is perceived, constructed and interpreted by clients in clinical genetics, and the effects on decision-making: systematic review.” Journal of Genetic Counseling 17(1) (2008): 30–63.

11. D’Agincourt-Canning L. “The effect of experiential knowledge on construction of risk perception in hereditary breast/ovarian cancer.” Journal of Genetic Counseling 14(1) (2005): 55–69.

12. Appelbaum PS, Roth LH, Lidz C. “The therapeutic misconception: informed consent in psychiatric research.” International Journal of Law & Psychiatry 5(3-4) (1982): 319–329.

13. “BRCA1 and BRCA2: Cancer risk and genetic testing.” National Cancer Institute (2009) http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA. Accessed May 27, 2010.

14. Whittemore AS, Gong G, John EM, et al. “Prevalence of BRCA1 mutation carriers among U.S. Non-Hispanic Whites.” Cancer Epidemiology, Biomarkers & Prevention 13(12) (2004): 2078–2083.

15. Walter FM, Emery J. “‘Coming down the line’—Patients’ understanding of their family history of common chronic disease.” Annals of Family Medicine 3(5) (2005): 405–414.

16. Shiloh S. “Illness representations, self-regulation, and genetic counseling: a theoretical review.” Journal of Genetitc Counseling 15(5) (2006): 325–337.

17. Etchegary H, Perrier C. “Information processing in the context of genetic risk: implications for genetic-risk communication.” Journal of Genetic Counseling 16(4) (2007): 419–432.

18. Berkenstadt M, Shiloh S, Barkai G, Katznelson M, Goldman B. “Perceived personal control (PPC): A new concept in measuring outcome of genetic counseling.” American Journal of Medical Genetics82(1) (1999): 53–59.

19. Tversky A, Kahneman D. “The framing of decisions and the psychology of choice.” Science 211(4481) (1981): 453–458.

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21. Almqvist EW, Brinkman RR, Wiggins S, Hayden MR. “Canadian collaborative study of predictive testing. Psychological consequences and predictors of adverse events in the first 5 years after predictive testing for Huntington’s disease.” Clinical Genetics 64(4) (2003): 300–309.

CHAPTER 7

1. Fox R, Swazey J. Spare Parts: Organ Replacement in American Society. New York: Oxford University Press, 1992.

2. “Genetic/familial high-risk assessment: breast and ovarian.” NCCN Guidelines. National Comprehensive Cancer Network. 2010. http://www.nccn.org. Accessed May 27, 2010.

3. Bermajo-Perez MJ, Marquez-Calderon S, Llanos-Mendez A. “Effectiveness of preventive interventions in BRCA1/2 gene mutation carriers: a systematic review.” International Journal of Cancer 121(2) (2007): 225–231.

4. Anderson K, Jacobson JS, Heitjan DF, et al. “Cost-effectiveness of preventive strategies for women with BRCA1 or BRCA2 mutation.” Annals of Internal Medicine 144(6) (2006): 397–406.

5. Lerman C, Hughes C, Croyle RT, et al. “Prophylactic surgery decisions and surveillance practices one year following BRCA 1/2 testing.” Preventive Medicine 31(1) (2000): 75–80.

6. Schwartz MD, Kaufman E, Peshkin, BN, et al. 2003. “Bilateral prophylactic oophorectomy and ovarian cancer screening following BRCA1/BRCA2 mutation testing.” Journal of Clinical Oncology21(21) (2003): 4034–4041.

7. Meijers-Heijboer EJ, Verhoog LC, Brekelmans CTM, et al. “Presymptomatic DNA testing and prophylactic surgery in families with a BRCA 1 or BRCA 2 mutation.” The Lancet 355(9220) (2000): 2015–2020.

8. Metcalfe KA, Lubinkski J, Ghadirian P, et al. “Predictors of contralateral prophylactic mastectomy in women with BRCA 1 or BRCA 2 mutation: the hereditary breast cancer clinical study group.” Journal of Clinical Oncology 26(7) (2008): 1093–1097.

9. Metcalfe KA, Ghadirian P, Rosen B, et al. “Variation in rates of uptake of preventive options by Canadian women carrying the BRCA 1 or BRCA 2 genetic mutation.” Open Medicine 1(2) (2007): 92–98.

10. Metcalfe KA, Birenbaum-Carmeli D, Lubinski J, et al. and the Hereditary Breast Cancer Clinical Study Group. “International variation in rates of uptake of preventive options in BRCA 1 and BRCA 2mutation carriers.” International Journal of Cancer 122(9) (2008): 2017–2022.

11. Bradbury AR, Ibe CN, Dignam JJ, et al. “Uptake and timing of bilateral prophylactic salpingo-oophorectomy among BRCA 1 and BRCA 2 mutation carriers.” Genetics in Medicine 10(3) (2008): 161–166.

12. Kram V, Peretz T, Sagi M. 2006. “Acceptance of preventive surgeries by Israeli women who had undergone BRCA testing.” Familial Cancer 5(4) (2006): 327–335.

13. Miller SM, Roussi P, Daly MB, et al. “Enhanced counseling for women undergoing BRCA 1/2 testing: impact on subsequent decision making about risk reduction behaviors.” Health Education and Behavior 32(5) (2005): 654–667.

14. Van Dijk S, Otten W, Zoeteweij MW, et al. “Genetic counseling and the intention to undergo prophylactic mastectomy: effects of a breast cancer risk assessment.” British Journal of Cancer 88(11) (2003): 1675–1681.

15. Madalinska JB, van Beurden M, Bleiker EMA, et al. “Predictors of prophylactic bilateral salpingo-oophorectomy compared with gynecologic screening use in BRCA 1/2 mutation carriers.” Journal of Clinical Oncology25(3) (2007): 301–307.

16. Antill Y, Reynolds J, Young M, et al. “Risk-reducing surgery in women with familial susceptibility for breast and/or ovarian cancer.” European Journal of Cancer 42(5) (2006): 621–628.

17. Hallowell N, Jacobs I, Richards M, Mackay J, Gore M. “Surveillance or surgery? A description of the factors that influence high risk premenopausal women’s decisions about prophylactic oophorectomy.” Journal of Medical Genetics 38(10) (2001): 683–726.

18. Tiller K, Meiser B, Butow P, et al. “Psychological impact of prophylactic oophorectomy in women at increased risk of developing ovarian cancer: a prospective study.” Gynecologic Oncology 86(2) (2002): 212–219.

CHAPTER 8

1. Sermon K, De Rijcke M, Lissens W, et al. “Preimplantation genetic diagnosis for Huntington’s disease with exclusion testing.” European Journal of Human Genetics 10(10) (2002): 591–598.

2. Simpson SA, Harper PS, United Kingdom Huntington’s Disease Prediction Consortium. “Prenatal testing for Huntington’s disease: experience within the UK 1994–1998.” Journal of Medical Genetics38(5) (2001): 333–335.

3. Stern HJ, Harton GL, Sisson ME, et al. “Non-disclosing preimplantation genetic diagnosis for Huntington disease.” Prenatal Diagnosis 22(6) (2002): 503–507.

4. Lavery SA, Aurell R, Turner C, et al. “Preimplantation genetic diagnosis: patients’ experiences and attitudes.” Human Reproduction 17(9) (2002): 2464–2467.

5. Elger B, Harding T. “Huntington’s disease: do future physicians and lawyers think eugenically?” Clinical Genetics 64(4) (2003): 327–338.

6. Alonso Vilatela ME, Ochoa Morales A, Garcia de la Cadena C, Ruiz Lopez I, Martinez Aranda C, Villa A. “Predictive and prenatal diagnosis of Huntington’s disease: attitudes of Mexican neurologists, psychiatrists, and psychologists. Archives of Medical Research 30(4) (1999): 320–324.

7. Drake H, Reid M, Marteau T. “Attitudes towards termination for fetal abnormality: comparisons in three European countries.” Clinical Genetics 49(3) (1996): 134–140.

8. Hayden M. “Predictive testing for Huntington’s disease: the calm after the storm.” The Lancet 356(9246) (2000): 1944–1945.

9. Richards FH, Rea G. “Reproductive decision making before and after predictive testing for Huntington’s disease: an Australian perspective.” Clinical Genetics 67(5) (2005): 404–411.

10. Creighton S, Almqvist EW, MacGregor D, et al. “Predictive, pre-natal and diagnostic genetic testing for Huntington’s disease: the experience in Canada from 1987 to 2000.” Clinical Genetics 63(6) (2003): 462–475.

11. Lesca G, Goizet C, Dürr A. “Predictive testing in the context of pregnancy: experience in Huntington’s disease and autosomal dominant cerebellar ataxia.” Journal of Medical Genetics 39(7) (2002): 522–525.

12. Maat-Kievit A, Vegter-van der Vlis M, Zoeteweij M, et al. “Experience in prenatal testing for Huntington’s disease in The Netherlands: procedures, results and guidelines (1987–1997).” Prenatal Diagnosis 19(5) (1999): 450–457.

13. Taylor CA, Myers RH. “Long-term impact of Huntington disease linkage testing.” American Journal of Medical Genetics 70(4) (1997): 365–370.

14. Goizet C, Lesca G, Durr A. “Presymptomatic testing in Huntington’s disease and autosomal dominant cerebellar ataxias.” Neurology 59(9) (2002): 1330–1336.

15. Evers-Kiebooms G, Nys K, Harper P, et al. “Predictive DNA-testing for Huntington’s disease and reproductive decision making: a European collaborative study.” European Journal of Human Genetics10(3) (2002): 167–176.

16. Adam S, Wiggins S, Whyte P, et al. “Five year study of prenatal testing for Huntington’s disease: demand, attitudes, and psychological assessment.” Journal of Medical Genetics 30(7) (1993): 549–556.

17. Henn W. “Consumerism in prenatal diagnosis: A challenge for ethical guidelines.” Journal of Medical Ethics 26(6) (2000): 444–446.

18. Robertson JA. “Extending preimplantation genetic diagnosis: the ethical debate: Ethical issues in the new uses of preimplantation genetic diagnosis.” Human Reproduction 18(3) (2003): 465–471.

19. Braude PR, De Wert GM, Evers-Kiebooms G, Pettigrew RA, Geraedts JP. “Non-disclosure preimplantation genetic diagnosis for Huntington’s disease: practical and ethical dilemmas.” Prenatal Diagnosis 18(13) (1998): 1422–1426.

20. Downing, C. “Negotiating responsibility: Case studies of reproductive decision-making and prenatal genetic testing in families facing Huntington disease.” Journal of Genetic Counseling 14(3) (2005): 219–234.

21. Houlihan GD. “The evaluation of the ‘stages of change’ model for use in counselling client’s undergoing predictive testing for Huntington’s disease.” Journal of Advanced Nursing 29(5) (1999): 1137–1143.

22. Taylor SD. “Predictive genetic test decisions for Huntington’s disease: elucidating the test/no-test dichotomy.” Journal of Health Psychology 10(4) (2005): 597–612.

23. Coleman PK, Reardon DC, Strahan T, and Cougle JR. “The psychology of abortion: a review and suggestions for future research.” Psychology and Health 20(2) (2005): 237–271.

24. Hundert, EM. “A model for ethical problem solving in medicine, with practical applications.” American Journal of Psychiatry 144(7) (1987): 839–846.

25. Robertson JA. “Ethics and the future of preimplantation genetic diagnosis.” Reproductive BioMedicine Online., 2005. 10, Supp 1: 97–101.

26. Healy M. “Embryo diagnosis stirs controversy.” Los Angeles Times, July 29, 2003.

27. Bankole A, Sing S, Haas T. “Reasons why women have induced abortions: Evidence from 27 countries.” International Family Planning Perspectives 24(3) (1998): 117–152.

28. Sihvo S, Bajos N, Ducot B, Kaminski M, the Cocon Group. “Women’s life cycle and abortion decision in unintended pregnancies.” Journal of Epidemiology & Community Health 57(8) (2003): 601–605.

29. Thomassen R, Tibben A, Niermeijer MF, vand der Does E, van de Kamp JJP, Verhage F. “Attitudes of Dutch general practitioners towards presymptomatic DNA-testing for Huntington disease.” Clinical Genetics 43(2) (1993): 63–68.

30. Richards F, Williams K. “Impact on couple relationships of predictive testing for Huntington Disease: a longitudinal study.” American Journal of Medical Genetics 126A (2004): 161–169.

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CHAPTER 9

1. Greenhouse S. “Ex-Worker says her firing was based on genetic test.” New York Times, April 30, 2010.

2. Nowlan W. “A rational view of insurance and genetic discrimination.” Science 297(5579) (2002): 195–196.

3. Nowlan W. “A scarlet letter or a red herring?” Nature 241(6921) (2003): 313.

4. Wertz D. “Genetic discrimination—an overblown fear?” Nature Reviews Genetics 3(7) (2002): 496.

5. Otlowski M. “Exploring the concept of genetic discrimination.” Journal of Bioethical Inquiry 2(3) (2005): 165–176.

6. Otlowski MF, Taylor SD, Barlow-Stewart KK. “Genetic discrimination: too few data.” European Journal of Human Genetics 11(1) (2003): 1–2.

7. Treloar S, Taylor S, Otlowski M, Barlow-Stewart K, Stranger M, Chenoweth K. “Methodological considerations in the study of genetic discrimination: a review.” Community Genetics 7(4) (2004): 161–168.

8. Taylor S, Treloar S, Barlow-Stewart K, Otlowski M, Stranger M. “Investigating genetic discrimination in Australia: perceptions and experiences of clinical genetics service clients regarding coercion to test, insurance and employment.” Australian Journal of Emerging Technologies and Society 5(2) (2007): 63–83.

9. Taylor S, Treloar S, Barlow-Stewart K, Stranger M, Otlowski M. “Investigating genetic discrimination in Australia: a large-scale survey of clinical genetics clients.” Clinical Genetics 74(1) (2008): 20–30.

10. Rawls J. A Theory of Justice. Cambridge, MA: Harvard University Press, 1971.

CHAPTER 10

1. Klitzman R. When Doctors Become Patients. New York: Oxford University Press, 2008.

CHAPTER 11

1. Plass A, Koch U. “Participation of oncological outpatients in psychosocial support.” Psycho-Oncology 10(6) (2001): 511–520.

2. Ussher J, Kirsten L, Butow P, Sandoval M. “What do cancer support groups provide which other supportive relationships do not? The experience of peer support groups for people with cancer.” Social Science & Medicine62(10) (2006): 2565–2576.

3. Docherty A. “Experience, functions and benefits of a cancer support group.” Patient Education and Counseling 55(1) (2004): 87–93.

4. Taylor SE, Falke RL, Shoptaw SJ, Lichtman RR. “Social support, support groups, and the cancer patient.” Journal of Consulting and Clinical Psychology 54(5) (1986): 608–615.

5. Grande GE, Myers LB, Sutton SR. “How do patients who participate in cancer support groups differ from those who do not?” Psycho-Oncology 15(4) (2006): 321–334.

6. Shaw BR, Hawkins R, Arora N, McTavish F, Pingree S, Gustafson DH. “An exploratory study of predictors of participation in a computer support group for women with breast cancer.” CIN: Computers, Informatics, Nursing 24(1) (2006): 18–27.

7. Winzelberg AJ, Classen C, Alpers GW, et al. “Evaluation of an internet support group for women with primary breast cancer.” Cancer 97(5) (2003): 1164–1173.

8. Classen C, Butler LD, Koopman C, et al. “Support-expressive group therapy and distress in patients with metastatic breast cancer.” Archives of General Psychiatry 58(5) (2001): 494–501.

9. Finfgeld DL. “Therapeutic groups online: the good, the bad, and the unknown.” Issues in Mental Health Nursing 21(3) (2000): 241–255.

10. Coulson NS, Buchanan H, Aubeeluck A. “Social support in cyberspace: a content analysis of communication within a Huntington’s disease online support group.” Patient Education and Counseling68(2) (2007): 173–178.

11. Van Uden-Kraan CF, Drossaert CH, Taal E, Shaw BR, Seydel ER, van de Laar MAFJ. “Empowering processes and outcomes of participation in online support groups for patients with breast cancer, arthritis, or fibromyalgia.” Qualitative Health Research 18(3) (2008): 405–417.

12. Radin P. “‘To me, it’s my life’: medical communication, trust, and activism in cyberspace.” Social Science & Medicine 62(3) (2006): 591–601.

13. Barker KK. “Electronic support groups, patient-consumers, and medicalization: the case of contested illness.” Journal of Health and Social Behavior 49(1) (2008): 20–36.

14. Appelbaum PS, Roth LH, Lidz C. “The therapeutic misconception: informed consent in psychiatric research.” International Journal of Law & Psychiatry 5(3–4) (1982): 319–329.

CHAPTER 13

1. McCabe LL, McCabe ERB. DNA: Promise and Peril. Berkeley, CA: University of California Press, 2008.

2. Marteau T, Richards M. (eds.) The Troubled Helix: Social and Psychological Implications of the New Human Genetics. Cambridge, England: Cambridge University Press, 1999.

3. Klitzman R, Daya S. “Challenges and changes in spirituality among doctors who become patients.” Social Science & Medicine 61(11) (2005): 2396–2406.