Corder EH, Saunders AM, Strittmatter WJ et al. Gene dose of apolipoprotein E type 4 allele and the risk of Alzheimer’s disease in late onset families. Science 1993;261:921–923.
Breitner JC, Wyse BW, Anthony JC et al. APOE-e4 count predicts age when prevalence of AD increases, then declines: the Cache County Study. J Neurol 1999;53:321–331.
Christensen KD, Roberts JS, Royal CD et al. Incorporating ethnicity into genetic assessment for Alzheimer’s disease: the REVEAL study experience. Genet Med 2008;10:207–214.
Seshadri S & Wolf PA. Lifetime risk of stroke and dementia: current concepts, and estimates from the Framingham Study. Lancet Neurol 2007;6:1106–1114.
Bird TD.Alzheimer disease overview. In: Pagon RA, Adam MP, Ardinger HH et al(eds). GeneReviews. University of Washington: Seattle, WA, 23 October 1998. Updated 24 September 2015.
American College of Medical Genetics, American Society of Human Genetics Working Group on ApoE and Alzheimer Disease. Statement on the use of Apolipoprotein E testing for Alzheimer disease. JAMA 1995;274:1627–1629.
Medical and Scientific Advisory Committee and Alzheimer’s Disease International. Consensus statement on genetic testing for Alzheimer disease. Alzheimer Dis Assoc Disord 1995;9:182–87.
National Institute on Aging and Alzheimer’s Association Working Group. Apolipoprotein E genotyping in Alzheimer disease. Lancet 1996;347:1091–1095.
Choosing Wisely. ACMG Provides Recommendations on Genetic Testing Through the Choosing Wisely® Campaign. http://www.choosingwisely.org/acmg-provides-recommendations-on-genetic-testing-through-the-choosing-wisely-campaign/. 10 July 2015. Accessed 12 January 2018.
Grosse SD, McBride CM, Evans JP et al. Personal utility and genomic information: look before you leap. Genet Med 2009;11:575–576.
Zallen DT. To Test or Not to Test: A Consumer’s Guide to Genetic Screening and Risk. Rutgers University Press: New Brunswick, NJ, 2008: 73–107.
Green RC, Roberts JS, Cupples LA et al. Disclosure of APOE genotype for risk of Alzheimer’s disease. N Engl J Med 2009;361:245–254.
Roberts JS, Christensen KD & Green RC. Using Alzheimer’s disease as a model for genetic risk disclosure: implications for personal genomics. Clin Genet 2011;80:407–414.
Hyejin K, Sefcik JS & Bradway C. Characteristics of qualitative descriptive studies: a systemic review. Res Nurs Health 2017;40:23–42.
Neergaard MA, Olesen F, Andersen RS & Sondergaard J. Qualitative description—the poor cousin of health research? BMC Med Res Methodol 2009;9:52.
Huynh RA & Mohan C. Alzheimer’s disease: biomarkers in the genome, blood, and cerebrospinal fluid. Front Neurol 2017;8:102–116.
Eckert SL, Katzen H, Roberts JS et al. Recall of disclosed apolipoprotein E genotype and lifetime risk estimate for Alzheimer’s disease: the REVEAL study. Genet Med 2006;8:746–751.
Lock M, Freeman J, Chilibeck G et al. Susceptibility genes and the question of embodied identity. Med Anthropol Q 2007;21:256–276.
National Society of Genetic Counselors, Genetic testing of minors for adult-onset conditions. 15 February 2017. https://www.nsgc.org/p/bl/et/blogaid=860. Accessed 12 January 2018.
Re/code Decode hosted by Kara Swisher. Interview with Anne Wojcicki released 3 April 2016. https://itunes.apple.com/us/podcast/re-code-decode-hosted-by-kara/id1011668648?mt=2#episodeGuid=gid%3A%2F%2Fart19-episode-locator%2FV0%2FXjMqFQjIEjXmQTYNq_1kLNl8CPNiyo-to7ChjXCLSdA Accessed 12 January 2018.
US Food and Drug Administration. FDA allows marketing of first direct-to-consumer tests that provide genetic risk information for certain conditions. 6 April 6 2017. https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm551185.htm Accessed 12 January 2018.
Quaid KA & Morris M. Reluctance to undergo predictive testing: the case of Huntington disease. Am J Med Genet 1995;45:41–45.
Zallen DT. Does it Run in the Family? A Consumer’s Guide to DNA Testing for Genetic Disorders. Rutgers University Press: New Brunswick, NJ, 2008.
Huntington’s Disease Society of America. Genetic testing protocol for Huntington’s disease. 2016. http://hdsa.org/wp-content/uploads/2015/02/HDSA-Gen-Testing-Protocol-for-HD.pdf. Accessed 12 January 2018.
American Society of Clinical Oncology. Policy statement update: genetic testing for cancer susceptibility. J. Clin Oncol. 2003;21:2397–406.
Goldman JS, Hahn SE, Williamson Catania J et al. Genetic counseling and testing for Alzheimer disease: joint practice guidelines of the American College of Medical Genetics and the National Society of Genetic Counselors. Genet Med 2011;13:597–605.
Klitzman R, Chung W, Marder K et al. Attitudes and practices among internists concerning genetic testing. J Genet Counsel 2013;22:90–100.
Feero WG & Green ED. Genomics education for health care professionals in the 21st century. JAMA 2011;306:989–990.
Stacey D, Légaré F, Lewis K et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev 2017;Issue 4. Art. no.: CD001431 doi:doi:10.1002/14651858.CD001431.pub5.
Ekstract M, Holtzman GI, Kim KY et al. Evaluation of a Web-based decision aid for people considering the APOE genetic test for Alzheimer risk. Genet Med 2017;19:676–682.
Baumgart M, Snyder HM, Carrillo MC, et al. Summary of the evidence on modifiable risk factors for cognitive decline and dementia: a population n-based perspective. Alzheimers Dement 2015;11:718–726.