Genetic susceptibility testing for neurodegenerative diseases: Ethical and practice issues

Progress in Neurobiology

Volumn 110, Issue , 2013, Pages 89-101

  Roberts, J Scott ^a   Uhlmann, Wendy R ^b  

^a UNIVERSITY OF MICHIGAN SCHOOL OF PUBLIC HEALTH   (United States)

^b UNIVERSITY OF MICHIGAN MEDICAL SCHOOL   (United States)

Author keywords

Apolipoprotein E (APOE); Ethics; Genetic counseling; Genetic testing; Risk assessment

Indexed keywords

APOLIPOPROTEIN E; CARBAMAZEPINE; CLOBAZAM; CYTOCHROME P450 2C19; CYTOCHROME P450 2D6; DEXTROMETHORPHAN PLUS QUINIDINE; GALANTAMINE; HLA B ANTIGEN; HLA B1502 ANTIGEN; PHENYTOIN; TETRABENAZINE; UNCLASSIFIED DRUG;

ALZHEIMER DISEASE; AMYOTROPHIC LATERAL SCLEROSIS; ANXIETY DISORDER; BEHAVIOR; BRAIN INJURY; COMPLEX PARTIAL SEIZURE; CONSUMER; DEGENERATIVE DISEASE; DEMENTIA; GENETIC RISK; GENETIC SCREENING; GENETIC SUSCEPTIBILITY; GENOTYPE; HUMAN; HUMAN GENOME; HUNTINGTON CHOREA; MEDICAL ETHICS; MEDICAL PRACTICE; MILD COGNITIVE IMPAIRMENT; NEUROPATHIC PAIN; PARKINSON DISEASE; PHARMACOGENOMICS; PRION DISEASE; PRIORITY JOURNAL; PSEUDOBULBAR PALSY; RANDOMIZED CONTROLLED TRIAL (TOPIC); REVIEW; SEIZURE; TONIC CLONIC SEIZURE;

APOLIPOPROTEIN E (APOE); ETHICS; GENETIC COUNSELING; GENETIC TESTING; RISK ASSESSMENT;

GENETIC COUNSELING; GENETIC PREDISPOSITION TO DISEASE; GENETIC TESTING; HUMANS; NEURODEGENERATIVE DISEASES; RISK ASSESSMENT;

EID: 84886730124     PISSN: 03010082     EISSN: 18735118     Source Type: Journal    
DOI: 10.1016/j.pneurobio.2013.02.005     Document Type: Review

References (144)

1. Almqvist E.W., et al. A worldwide assessment of the frequency of suicide, suicide attempts, or psychiatric hospitalization after predictive testing for Huntington disease. American Journal of Human Genetics 1999, 64(5):1293-1304.
2. American Board of Genetic Counseling Inc., 2010. Retrieved September 10, 2012. From http://www.abgc.net/ABGC/AmericanBoardofGeneticCounselors.asp.
3. American Board of Medical Genetics, 2011. Number of certified specialists in genetics. Retrieved January 16, 2013. From http://www.abmg.org/pages/resources_certspecial.shtml.
4. American College of Medical Genetics, 2008. ACMG statement on direct-to-consumer genetic testing. Retrieved from http://www.acmg.net/AM/Template.cfm%3FSection=Policy_Statements%26Template=/CM/ContentDisplay.cfm%26ContentID=2975.
5. American College of Medical Genetics/American Society of Human Genetics Working Group on APOE and Alzheimer disease Statement on use of apolipoprotein E testing for Alzheimer disease. Journal of the American Medical Association 1995, 274(20):1627-1629.
6. American Society of Human Genetics Board of Directors/American College of Medical Genetics Board of Directors Points to consider: ethical, legal, and psychosocial implications of genetic testing in children and adolescents. American Journal of Human Genetics 1995, 57(5):1233-1241.
7. Andersen P.M., Al-Chalabi A. Clinical genetics of amyotrophic lateral sclerosis: what do we really know?. Nature Reviews Neurology 2011, 7(11):603-615.
8. Appelbaum P.S., Grisso T. The MacArthur Competence Assessment Tool for Clinical Research (MacCAT-CR) 2001, Professional Resource Press, Sarasota, FL.
9. Barnes D.E., et al. Predicting risk of dementia in older adults: the late-life dementia risk index. Neurology 2009, 73(3):173-179.
10. Bates G., et al. Huntington's Disease 2002, Oxford University Press, New York, NY.
11. Beattie B.L. Consent in Alzheimer's disease research: risk/benefit factors. Canadian Journal of Neurological Sciences 2007, 34(1):S27-S31.
12. Bertram L., et al. Systematic meta-analyses of Alzheimer disease genetic association studies: the AlzGene database. Nature Genetics 2007, 39(1):17-23.
13. Bertram L., Tanzi R.E. The genetic epidemiology of neurodegenerative disease. Journal of Clinical Investigation 2005, 115(6):1449-1457.
14. Bombard Y., et al. Perceptions of genetic discrimination among people at risk for Huntington's disease: a cross sectional survey. BMJ 2009, 338:b2175.
15. Brickell K.L., et al. Early-onset Alzheimer disease in families with late-onset Alzheimer disease: a potential important subtype of familial Alzheimer disease. Archives of Neurology 2006, 63(9):1307-1311.
16. Brown K., Mastrianni J.A. The prion diseases. Journal of Geriatric Psychiatry and Neurology 2010, 23(4):277-298.
17. Burke W. Genetic testing. New England Journal of Medicine 2002, 347(23):1867-1875.
18. Burton A. Big science for a big problem: ADNI enters its second phase. Lancet Neurology 2011, 10(3):206-207.
19. Bustamante C.D., et al. Genomics for the world. Nature 2011, 475(7355):163-165.
20. Byrne S., et al. Rate of familial amyotrophic lateral sclerosis: a systematic review and meta-analysis. Journal of Neurology, Neurosurgery, and Psychiatry 2011, 82(6):623-627.
21. Campion D., et al. Early-onset autosomal dominant alzheimer disease: prevalence, genetic heterogeneity, and mutation spectrum. American Journal of Human Genetics 1999, 65(3):664-670.
22. Caulfield T., et al. Research ethics recommendations for whole-genome research: consensus statement. PLoS Biology 2008, 6.(3).
23. Chao S., et al. Health behavior changes after genetic risk assessment for Alzheimer disease: the REVEAL study. Alzheimer Disease and Associated Disorders 2008, 22(1):94-97.
24. Chapman J., et al. The risk of developing Creutzfeldt-Jakob disease in subjects with the PRNP gene codon 200 point mutation. Neurology 1994, 44(9):1683-1686.
25. Christensen K.D., et al. Incorporating ethnicity into genetic risk assessment for Alzheimer disease: the REVEAL study experience. Genetics in Medicine 2008, 10(3):207-214.
26. Cohen S.A., et al. Report from the National Society of Genetic Counselors service delivery model task force: a proposal to define models, components, and modes of referral. Journal of Genetic Counseling 2012, 21(5):645-651.
27. Cuda-Kroen, G., 2012. Search for Parkinson's genes turns to online social networking. Retrieved from Shots: NPR's Health Blog website: http://www.npr.org/blogs/health/2012/08/20/158943097/search-for-parkinsons-genes-turns-to-online-social-networking.
28. Cupples L.A., et al. Estimating risk curves for first-degree relatives of patients with Alzheimer's disease: the REVEAL study. Genetics in Medicine 2004, 6(4):192-196.
29. Davis D.S. Genetic dilemmas and the child's right to an open future. The Hastings Center Report 1997, 27(2):7-15.
30. de Rijk M.C., et al. Prevalence of parkinsonism and Parkinson's disease in Europe: the EUROPARKINSON Collaborative Study. European Community Concerted Action on the Epidemiology of Parkinson's disease. Journal of Neurology, Neurosurgery and Psychiatry 1997, 62(1):10-15.
31. DeJesus-Hernandez M., et al. Expanded GGGGCC hexanucleotide repeat in noncoding region of C9ORF72 causes chromosome 9p-linked FTD and ALS. Neuron 2011, 72(2):245-256.
32. DeKosky S.T., et al. Traumatic brain injury - football, warfare, and long-term effects. New England Journal of Medicine 2010, 363(14):1293-1296.
33. Do C.B., et al. Web-based genome-wide association study identifies two novel loci and a substantial genetic component for Parkinson's disease. PLoS Genetics 2011, 7(6).
34. Dressler L.G. Disclosure of research results from cancer genomic studies: state of the science. Clinical Cancer Research 2009, 15(13):4270-4276.
35. Duyao M., et al. Trinucleotide repeat length instability and age of onset in Huntington's disease. Nature Genetics 1993, 4(4):387-392.
36. Eckert S.L., et al. Recall of disclosed apolipoprotein E genotype and lifetime risk estimate for Alzheimer's disease: the REVEAL study. Genetics in Medicine 2006, 8(12):746-751.
37. Elbaz A., et al. Risk tables for parkinsonism and Parkinson's disease. Journal of Clinical Epidemiology 2002, 55(1):25-31.
38. Ertekin-Taner N. Genetics of Alzheimer's disease: a centennial review. Neurologic Clinics 2007, 25(3):611-667.
39. European Society of Human Genetics Genetic testing in asymptomatic minors: recommendations of the European Society of Human Genetics. European Journal of Human Genetics 2009, 17(6):720-721.
40. Fabsitz R.R., et al. Ethical and practical guidelines for reporting genetic research results to study participants: updated guidelines from a National Heart Lung and Blood Institute Working Group. Circulation: Cardiovascular Genetics 2010, 3(6):574-580.
41. Farrer L.A., et al. Effects of age, sex, and ethnicity on the association between apolipoprotein E genotype and Alzheimer disease. A meta-analysis. APOE and Alzheimer Disease Meta Analysis Consortium. Journal of the American Medical Association 1997, 278(16):1349-1356.
42. Farrer M., et al. Lewy bodies and parkinsonism in families with parkin mutations. Annals of Neurology 2001, 50(3):293-300.
43. Foroud T., et al. Heterozygosity for a mutation in the parkin gene leads to later onset Parkinson disease. Neurology 2003, 60(5):796-801.
44. Gambetti P., et al. Fatal familial insomnia and familial Creutzfeldt-Jakob disease: clinical, pathological and molecular features. Brain Pathology 1995, 5(1):43-51.
45. Gandy S., Dekosky S.T. APOE epsilon4 status and traumatic brain injury on the gridiron or the battlefield. Science Translation Medicine 2012, 4(134).
46. Gao S., et al. The relationships between age, sex, and the incidence of dementia and Alzheimer disease: a meta-analysis. Archives of General Psychiatry 1998, 55(9):809-815.
47. Genetics and Public Policy Center Johns Hopkins University Berman Institute of Bioethics, 2011. List of DTC genetic testing companies. Retrieved September 10, 2012. From http://www.dnapolicy.org/resources/DTCAug2011byDiseasecategory.pdf.
48. Gigerenzer G., Edwards A. Simple tools for understanding risks: from innumeracy to insight. BMJ 2003, 327(7417):741-744.
49. Goetz, T., 2010. Sergey Brin's Search for a Parkinson's Cure. Wired. Retrieved from wired.com website: http://www.wired.com/magazine/2010/06/ff_sergeys_search/.
50. Goldenberg A.J., Sharp R.R. The ethical hazards and programmatic challenges of genomic newborn screening. Journal of the American Medical Association 2012, 307(5):461-462.
51. Goldman J.S., et al. Genetic counseling and testing for Alzheimer's disease: joint practice guidelines of the American College of Medical Genetics and the National Society of Genetic Counselors. Genetics in Medicine 2011, 13(6):597-605.
52. Gollust S.E., et al. Direct-to-consumer sales of genetic services on the Internet. Genetics in Medicine 2003, 5(4):332-337.
53. Green R.C., et al. Disclosure of APOE genotype for risk of Alzheimer's disease. New England Journal of Medicine 2009, 361(3):245-254.
54. Guttmacher A.E., et al. Genomic medicine: who will practice it? A call to open arms. American Journal of Medical Genetics 2001, 106(3):216-222.
55. Hamilton, A., 2008. Best Inventions of 2008. Time Magazine. Retrieved from Time Lists website: http://www.time.com/time/specials/packages/article/0,28804,1852747_1854493,00.html.
56. Harold D., et al. Genome-wide association study identifies variants at CLU and PICALM associated with Alzheimer's disease. Nature Genetics 2009, 41(10):1088-1093.
57. Hayden M.R. Predictive testing for Huntington's disease: the calm after the storm. Lancet 2000, 356(9246):1944-1945.
58. Heshka J.T., et al. A systematic review of perceived risks, psychological and behavioral impacts of genetic testing. Genetics in Medicine 2008, 10(1):19-32.
59. Holmes C. Genotype and phenotype in Alzheimer's disease. British Journal of Psychiatry 2002, 180:131-134.
60. Hudson K., et al. ASHG Statement on direct-to-consumer genetic testing in the United States. Obstetrics and Gynecology 2007, 110(6):1392-1395.
61. Huggins M., et al. Predictive testing for Huntington disease in Canada: adverse effects and unexpected results in those receiving a decreased risk. American Journal of Medical Genetics 1992, 42(4):508-515.
62. Hunter D.J., et al. Letting the genome out of the bottle - will we get our wish?. New England Journal of Medicine 2008, 358(2):105-107.
63. Huntington's Disease Collaborative Research Group A novel gene containing a trinucleotide repeat that is expanded and unstable on Huntington's disease. Cell 1993, 72(6):971-983.
64. Huntington's Disease Society of America Guidelines for Predictive Testing for Huntington's Disease 1989, Huntington's Disease Society of America, New York, NY.
65. Huntington's Disease Society of America Genetic Testing for Huntington's Disease 1994, Huntington's Disease Society of America, New York.
66. Huntington's Disease Society of America/United States Huntingon's Disease Genetic Testing Group, 2003. Genetic testing for Huntington's disease: it's relevance and implication (revised): Huntington's Disease Society of America.
67. Hyder A.A., Merritt M.W. Ancillary care for public health research in developing countries. Journal of the American Medical Association 2009, 302(4):429-431.
68. Institute of Medicine Health Literacy: A Prescription to End Confusion 2004, National Academy of Sciences, Washington, DC.
69. Institute of Medicine (US) Roundtable on Translating Genomic-Based Research for Health Innovations in Service Delivery in the Age of Genomics: Workshop Summary 2009, National Academies Press, Washington, DC.
70. International Huntington's Association and the World Federation of Neurology Research Group on Huntington's Chorea Guidelines for the molecular genetics predictive test in Huntington's disease. Journal of Medical Genetics 1994, 31(7):555-559.
71. Jack C.R. Alzheimer disease: new concepts on its neurobiology and the clinical role imaging will play. Radiology 2012, 263(2):344-361.
72. Janssens A.C., et al. A critical appraisal of the scientific basis of commercial genomic profiles used to assess health risks and personalize health interventions. American Journal of Human Genetics 2008, 82(3):593-599.
73. Javitt G.H., et al. Direct-to-consumer genetic tests, government oversight, and the first amendment: what the government can (and can't) do to protect the public's health. Oklahoma Law Review 2004, 57:251-302.
74. Jorm A.F., Jolley D. The incidence of dementia: a meta-analysis. Neurology 1998, 51(3):728-733.
75. Juneja T., et al. Prognosis in familial amyotrophic lateral sclerosis: progression and survival in patients with glu100gly and ala4val mutations in Cu, Zn superoxide dismutase. Neurology 1997, 48(1):55-57.
76. Klein C., et al. Parkin deletions in a family with adult-onset, tremor-dominant parkinsonism: expanding the phenotype. Annals of Neurology 2000, 48(1):65-71.
77. Kohane I.S., et al. The incidentalome: a threat to genomic medicine. Journal of the American Medical Association 2006, 296(2):212-215.
78. Kopits I.M., et al. Willingness to pay for genetic testing for Alzheimer's disease: a measure of personal utility. Genetic Testing and Molecular Biomarkers 2011, 15(12):871-875.
79. Korobkin R., Rajkumar R. The Genetic Information Nondiscrimination Act - a half-step toward risk sharing. New England Journal of Medicine 2008, 359(4):335-337.
80. Lambert J.C., et al. Genome-wide association study identifies variants at CLU and CR1 associated with Alzheimer's disease. Nature Genetics 2009, 41(10):1094-1099.
81. LaRusse S., et al. Genetic susceptibility testing versus family history-based risk assessment: impact on perceived risk of Alzheimer disease. Genetics in Medicine 2005, 7(1):48-53.
82. Lautenschlager N.T., et al. Risk of dementia among relatives of Alzheimer's disease patients in the MIRAGE study: what is in store for the oldest old?. Neurology 1996, 46(3):641-650.
83. Lipkus I.M. Numeric, verbal, and visual formats of conveying health risks: suggested best practices and future recommendations. Medical Decision Making 2007, 27(5):696-713.
84. Logroscino G., et al. Incidence of amyotrophic lateral sclerosis in Europe. Journal of Neurology, Neurosurgery and Psychiatry 2010, 81(4):385-390.
85. Majounie E., et al. Frequency of the C9orf72 hexanucleotide repeat expansion in patients with amyotrophic lateral sclerosis and frontotemporal dementia: a cross-sectional study. Lancet Neurology 2012, 11(4):323-330.
86. Marteau T.M., Lerman C. Genetic risk and behavioural change. BMJ 2001, 322(7293):1056-1059.
87. Marteau T.M., et al. Psychological impact of genetic testing for familial hypercholesterolemia within a previously aware population: a randomized controlled trial. American Journal of Medical Genetics A 2004, 128A(3):285-293.
88. Masters C.L., et al. The familial occurrence of Creutzfeldt-Jakob disease and Alzheimer's disease. Brain 1981, 104(3):535-558.
89. Mastrianni J.A., Roos R.P. The prion diseases. Seminars in Neurology 2000, 20(3):337-352.
90. McBride C.M., et al. The behavioral response to personalized genetic information: will genetic risk profiles motivate individuals and families to choose more healthful behaviors?. Annual Review of Public Health 2010, 31:89-103.
91. McCullough K.B., et al. Assessment of the pharmacogenomics educational needs of pharmacists. American Journal of Pharmaceutical Education 2011, 75(3):51.
92. McGuire A.L., Burke W. An unwelcome side effect of direct-to-consumer personal genome testing: raiding the medical commons. Journal of the American Medical Association 2008, 300(22):2669-2671.
93. Meiser B., Dunn S. Psychological impact of genetic testing for Huntington's disease: an update of the literature. Journal of Neurology, Neurosurgery and Psychiatry 2000, 69(5):574-578.
94. Nance M.A., Myers R.H. Juvenile onset Huntington's disease - clinical and research perspectives. Mental Retardation and Developmental Disabilities Research Reviews 2001, 7(3):153-157.
95. National Bioethics Advisory Commission Research Involving Human Biological Materials: Ethical Issues and Policy Guidance 1999, vol. 1. National Bioethics Advisory Commission, Rockville, MD.
96. National Center for Biotechnology Information U.S. National Library of Medicine, n.d. Genetic Testing Registry. Retrieved September 10, 2012. From http://www.ncbi.nlm.nih.gov/gtr/.
97. National Heart Lung and Blood Institute NHLBI Working Group on Reporting Genetic Results in Research Studies Meeting Summary 2004, National Institutes of Health, Bethesda, MD.
98. National Institute on Aging/Alzheimer's Association Working Group Apolipoprotein E genotyping in Alzheimer's disease. Lancet 1996, 347(9008):1091-1095.
99. National Society of Genetic Counselors, 2007. Position Statement: direct to consumer genetic testing (adopted 2007. revised 2011). Retrieved from http://www.nsgc.org/Advocacy/PositionStatements/tabid/107/Default.aspx%23DTC.
100. National Society of Genetic Counselors, 2012. Professional Status Survey Retrieved September 16, 2012. From http://www.nsgc.org/Publications/ProfessionalStatusSurvey/tabid/142/Default.aspx.
101. Neumann P.J., et al. Willingness-to-pay for predictive tests with no immediate treatment implications: a survey of US residents. Health Economics 2012, 21(3):238-251.
102. Neumann P.J., et al. Public attitudes about genetic testing for Alzheimer's disease. Health Affairs 2001, 20(5):252-264.
103. Ng P.C., et al. An agenda for personalized medicine. Nature 2009, 461(7265):724-726.
104. Offit K. Genomic profiles for disease risk: predictive or premature?. Journal of the American Medical Association 2008, 299(11):1353-1355.
105. Payami H., et al. Increased risk of Parkinson's disease in parents and siblings of patients. Annals of Neurology 1994, 36(4):659-661.
106. Perls T.T. Anti-aging quackery: human growth hormone and tricks of the trade - more dangerous than ever. Journals of Gerontology, Series A, Biological Sciences and Medical Sciences 2004, 59(7):682-691.
107. Petersen R.C., et al. Mild cognitive impairment: ten years later. Archives in Neurology 2009, 66(12):1447-1455.
108. Phelan J.C., et al. Effects of attributing serious mental illnesses to genetic causes on orientations to treatment. Psychiatric Services 2006, 57(3):382-387.
109. Pollack, A., 2009. Google co-founder backs vast Parkinson's study. New York Times. Retrieved from The New York Times: Business Section website: http://www.nytimes.com/2009/03/12/business/12gene.html%3F_r=1.
110. Post S.G., et al. The clinical introduction of genetic testing for Alzheimer disease, an ethical perspective. Journal of the American Medical Association 1997, 277(10):832-836.
111. Potter N.T., et al. Technical standards and guidelines for Huntington disease testing. Genetics in Medicine 2004, 6(1):61-65.
112. Reiman E.M., et al. Alzheimer's prevention initiative: a plan to accelerate the evaluation of presymptomatic treatments. Journal of Alzheimers Disease 2011, 26(3):321-329.
113. Reiman E.M., et al. Alzheimer's prevention initiative: a proposal to evaluate presymptomatic treatments as quickly as possible. Biomarkers in Medicine 2010, 4(1):3-14.
114. Renton A.E., et al. A hexanucleotide repeat expansion in C9ORF72 is the cause of chromosome 9p21-linked ALS-FTD. Neuron 2011, 72(2):257-268.
115. Roberts J.S. Genetic testing. Encyclopedia of Care of the Elderly 2001, 298-300. Springer Publishing, New York, NY. M.D. Mezey (Ed.).
116. Roberts J.S., et al. Reasons for seeking genetic susceptibility testing among first-degree relatives of people with Alzheimer disease. Alzheimer Disease and Associated Disorders 2003, 2(17):86-93.
117. Roberts J.S., et al. Genetic risk assessment for adult children of people with Alzheimer's disease. Journal of Geriatric Psychiatry and Neurology 2005, 18:250-255.
118. Romero L.J., et al. Emotional responses to APOE genotype disclosure for Alzheimer disease. Journal of Genetic Counseling 2005, 14(2):141-150.
119. Roses A.D. The medical and economic roles of pipeline pharmacogenetics: Alzheimer's disease as a model of efficacy and HLA-B(*)5701 as a model of safety. Neuropsychopharmacology 2009, 34(1):6-17.
120. Schneider S.A., et al. Genetic testing for neurologic disorders. Seminars in Neurology 2011, 31(5):542-552.
121. Senior V., Marteau T.M. Causal attributions for raised cholesterol and perceptions of effective risk-reduction: self-regulation strategies for an increased risk of coronary heart disease. Psychology and Health 2007, 22(6):699-717.
122. Seshadri S., et al. The lifetime risk of stroke: estimates from the Framingham Study. Stroke 2006, 37(2):345-350.
123. Shalowitz D.I., Miller F.G. Disclosing individual results of clinical research: implications of respect for participants. Journal of the American Medical Association 2005, 294(6):737-740.
124. Slooter A.J., et al. Risk estimates of dementia by apolipoprotein E genotypes from a population-based incidence study: the Rotterdam Study. Archives of Neurology 1998, 55(7):964-968.
125. Sperling R.A., et al. Testing the right target and right drug at the right stage. Science Translational Medicine 2011, 3(111):111-133.
126. Spudich S., et al. Complete penetrance of Creutzfeldt-Jakob disease in Libyan Jews carrying the E200K mutation in the prion protein gene. Molecular Medicine 1995, 1(6):607-613.
127. Testa D., et al. Survival of 793 patients with amyotrophic lateral sclerosis diagnosed over a 28-year period. Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders 2004, 5(4):208-212.
128. Timman R., et al. Adverse effects of predictive testing for Huntington disease underestimated: long-term effects 7-10 years after the test. Health Psychology 2004, 23(2):189-197.
129. Traynor B.J., et al. Incidence and prevalence of ALS in Ireland, 1995-1997: a population-based study. Neurology 1999, 52(3):504-509.
130. Uhlmann W.R. Ethical dilemmas. Neurogenetics: Scientific and Clinical Advances 2006, 87-106. Taylor & Francis, New York, NY. D. Lynch (Ed.).
131. Uhlmann W.R. Thinking it all through: case preparation and management. A Guide to Genetic Counseling 2009, 93-131. Wiley-Blackwell, New York, NY. 2nd ed. W.R. Uhlmann, J.L. Schuette, B.M. Yashar (Eds.).
132. US Food and Drug Administration (FDA), n.d. December 13, 2012. Table of Pharmacogenomic Biomakers in Drug Labels. Retrieved January 15, 2013. From http://www.fda.gov/Drugs/ScienceResearch/ResearchAreas/Pharmacogenetics/ucm083378.htm.
133. US Government Accountability Office, 2010. Misleading Test Results Are Further Complicated by Deceptive Marketing and Other Questionable Practices (GAO-10-847T), Washington, DC. Retrieved from http://gao.gov/products/GAO-10-847T.
134. Van Den Eeden S.K., et al. Incidence of Parkinson's disease: variation by age, gender, and race/ethnicity. American Journal of Epidemiology 2003, 157(11):1015-1022.
135. Washington H. Genetic perdition. Medical Apartheid: The Dark History of Medical Experimentation on Black Americans 2006, 299-324. Doubleday, New York.
136. Wilfond B., Ross L.F. From genetics to genomics: ethics, policy, and parental decision-making. Journal of Pediatric Psychology 2009, 34(6):639-647.
137. Williams-Jones B. Where there's a web, there's a way: commercial genetic testing and the Internet. Journal of Community Genetics 2003, 6(1):46-57.
138. Windl O., et al. Molecular genetics of human prion diseases in Germany. Human Genetics 1999, 105(3):244-252.
139. Wolf S.M., et al. Managing incidental findings and research results in genomic research involving biobanks and archived data sets. Genetics in Medicine 2012, 14(4):361-384.
140. Woloshin S., Schwartz L.M. How can we help people make sense of medical data?. Effective Clinical Practice 1999, 2(4):176-183.
141. World Federation of Neurology Research Group on Huntington's Chorea Ethical issues policy statement on Huntington's disease molecular predictive test. Journal of the Neurological Sciences 1989, 94(1-3):327-332.
142. Yeager A. News 2008: the year in which.... Nature 2008, (456):844-845. Retrieved from nature.com website: http://www.nature.com/news/2008/081217/full/456844a.html. 10.1038/456844a.
143. Yu C.E., et al. Comprehensive analysis of APOE and selected proximate markers for late-onset Alzheimer's disease: patterns of linkage disequilibrium and disease/marker association. Genomics 2007, 89(6):655-665.
144. Zick C.D., et al. Genetic testing for Alzheimer's disease and its impact on insurance purchasing behavior. Health Affairs 2005, 24(2):483-490.