Decision Making, Genetic Testing, and Personalized Medicine

Genetic Testing

Completed Projects

  • Genetic Testing for Huntington Disease in At Risk Adolescents and Young Adults, NIH, PI: Kimberly A. Quaid


Book Chapters

  • Quaid KA (2013) Ethical and legal issues in molecular testing.  In L. Cheng and D. Zhang (eds.) Essentials of Molecular Genetic Pathology 2nd Edition.  Totowa, NJ Humana Press. Pages 1083-1090.
  • Quaid KA and Cushman LJ (2013) Genetic counseling.  In L. Cheng and D. Zhang (eds.) Essentials of Molecular Genetic Pathology 2nd Edition.  Totowa, NJ: Humana Press. Pages 645-652.
  • Quaid KA (2009) Presymptomatic genetic testing in children. In Geoffrey Miller (ed.) Pediatric Bioethics. New York, NY: Cambridge University Press. Pages 125-140.

Journal Articles

  • Horsting JMH, Dlouhy SR, Hanson K, Quaid KA, Bai S and Hines KA. (2013) Genetic counselors’ experience with cell-free fetal DNA testing as a prenatal screening option for aneuploidy. Journal of Genetic Counseling, published online December 19, 2013.
  • Carroll JM, Quaid KA, Stone K, Jones R, Schubert F and Griffith CB. (2013) Two is better than one: A case of homozygous muscular dystrophy. American Journal of Medical Genetics. 16 (7):1763-1767.  PMID:  23704040.
  • Morris JC, Aisen PS, Bateman RJ, Benzinger T, Cairns NJ, Fagan Am, Ghetti B, Goate AM, Holtzman DM, McDade E, Marcus DS, Martins RN, Masters CL, Mayeuz R, Oliver A, Quaid KA, Ringman JM, Rosser MN, Salloway S, Schofield PR, Selsor NJ, Sperling RA, Weiner MW, Xiong C, Moulder KL, Buckles VD. (2013) Developing an international network for Alzheimer’s research: The Dominantly Inherited Alzheimer Network. Clinical Investigation. 2(10):975-984.
  • Krukenberg RC, Koller DL, Weaver DD, Dickerson JN and Quaid, KA. (2013)  Two decades of Huntington disease testing: Patient demographics and reproductive choices. Journal of  Genetic Counseling 22(5):643-653. PMID:  23709094.
  • Quaid KA. (2012) Genetic Testing and Screening V: Predictive Genetic Testing. In Bruce Jennings (ed.) Encyclopedia of Bioethics. 4th Edition, New York: MacMillan Reference USA.
  • Quaid, KA. Genetic counseling for frontotemporal dementias (2011) Journal of Molecular Neuroscience 45:706-709. PMID: 21614537.
  • Oster E, Shoulson I, Quaid KA, Dorsey ER on behalf of the Huntington Study GroupPHAROS Investigators (2010). Genetic adverse selection: evidence from long-term care insurance and Huntington disease. Journal of Public Economics 94: 1041-1050.
  • Quaid KA, Swenson MM, Sims SL, Harrison JM, Moskowitz C, Stepanov N, Suter GW, Westphal BJ on behalf of the Huntington Study Group PHAROS Investigators and Coordinators. (2010) What were you thinking?: Individuals at risk for Huntington disease talk about having children. Journal of Genetic Counseling 19:606. PMID:20734119              
  • Williams, JK, Erwin C, Juhl AR, Mengeling M, Bombard Y, Hayden MH, Quaid KA, Shoulson I, Taylor S,  Paulsen JS and the I-RESPOND Investigators of the Huntington Study Group (2010)   In their own words: Reports of stigma and genetic discrimination by people at-risk for Huntington disease in the international RESPOND-HD study. American Journal of Medical Genetics Part B: Neuropsychiatric Genetics 153B: 1150-1159.
  • Erwin C, Williams JK, Juhl A, Mengeling M, Mills JA, Bombard Y, Hayden M, Quaid   KA, Shoulson I, Taylor S, Paulsen JS and the I-RESPOND Investigators of the Huntington Study Group (2010). Perception, experience and response to genetic discrimination in Huntington disease: The international RESPOND-HD study. American Journal of Medical Genetics Part B: Neuropsychiatric Genetics: 153B: 1081-1093.
  • Oster E, Shoulson I, Quaid K and Dorsey ER (2009) Genetic Adverse Selection: Evidence from Long Term care Insurance and Huntington Disease. NBER Working Paper #15326, September 2009.
  • Green RC, Roberts JS, Cupples LA, Relkin NR, Whitehouse PJ, Brown T, Exkert SL, Butson M, Sadovnick AD, Quaid KA, Chen C, Cook-Deegan R and Farrer L for the REVEAL Study Group (2009).  Disclosure of APOE genotype for risk of Alzheimer’s disease.  New England Journal of Medicine 361:245-254.
  • Dure LS, Quaid KA and Beasley M. (2008) A pilot assessment of when parents inform children of their risk for Huntington’s disease: the results of an internet-based survey.  Genetics in Medicine, 10:811-819.
  • Oster E, Dorsey ER, Bausch J, Shinaman A, Kayson E, Oakes D, Shoulson I, Quaid K for the Huntington Study Group PHAROS Investigators. (2008) Fear of health insurance loss among individuals at risk for Huntington Disease. American Journal of Medical Genetics Part A, 146A:2070-2077.
  • Quaid KA, Sims SL, Swenson MM, Harrison JM, Moskowitz C, Stepanov N, Suter GW and Westphal BJ.(2008) Living at risk: Concealing risk and preserving hope in Huntington disease. Journal of Genetic Counseling 17:117-128.
  • Quaid KA. Presymptomatic genetic testing in children. In: Miller G, editor. Pediatric bioethics. New York: Cambridge University Press; 2009. P. 125-40.
  • Quaid KA. Presymptomatic testing in Huntington disease. The Marker. Huntington Disease Society of America, May 2009.

Medical Decision Making

Current Projects

  • A Pilot Study of Providing Patients with Personalized Risk Information Regarding Colorectal Cancer Screening (PI:  Peter Schwartz)

Completed Projects

  • Giving Patients Quantitative Information about the Risks of Colorectal Cancer and the Benefits of Screening: A Randomized Trial of a Computer-based Presentation ( PI: Peter H. Schwartz)


  • Schwartz PH. Disclosure and rationality: comparative risk information and decision-making about prevention. Theor Med Bioeth. 2009;30(3):199-213.
  • Schwartz PH. Questioning the Quantitative Imperative: Decision Aids, Prevention, and the Ethics of Disclosure. Hastings Center Report 2011;41(2): 30-39.
  • Schwartz, PH, Edenberg, E, Barrett PR, Perkins SM, Meslin EM, Imperiale TF.  Patient understanding of benefits, risks, and alternatives to screening colonoscopy. Fam Med. 2013 Feb;45(2):83-9.
  • Torke, AM, Schwartz, PH, Holtz LR, Montz K, Sachs GA.  Older adults and forgoing cancer screening:  “I think it would be strange.”  JAMA Intern Med. 2013 Apr 8;173(7):526-31. doi: 10.1001/jamainternmed.2013.2903.  PMID:  2347883.
  • Torke AM, Schwartz PH, Holtz LR, Montz K, Sachs, GA. Caregiver perspectives on cancer screening for persons with dementia: “Why put them through it?” J Am Geriatr Soc. 2013;6(8):1309-1314.
  • Schwartz PH.  Do the numbers help patients decide:  Ethical and empirical challenges for evaluating the impact of quantitative information.  In Numerical Reasoning in Judgements and Decision Making About Health, eds. B. Anderson and J. Schulkin, Cambridge:  Cambridge Univ. Press. (in press)
  • Schwartz PH.  Small tumors as risk factors not disease.  In Philosophy of Science Supplement (Proceedings of the 2012 Biennial Meeting of the Philosophy of Science Association PartII:  Symposia Papers) (in press).

Personalized Medicine

Current projects:

  • Pilot Study of Individuals’ Responses to Hypothetical Information about Lifetime Risk of Colorectal Cancer (PI: Peter Schwartz) 
  • Patients' Opinions and Responses to the National Cancer Institute's Colorectal Cancer Risk Assessment Tool (PI: Peter Schwartz, Tom Imperiale)
  • A Pilot Study of Providing Patients with Personalized Risk Information Regarding Colorectal Cancer Screening (PI:  Peter Schwartz)

Completed Projects

  • Bioethics Program in Predictive Health Ethics Research, Richard M. Fairbanks Foundation, PI: Eric M. Meslin, Investigators: Kimberly A. Quaid, Peter H. Schwartz


  • Meslin EM, Cho MK. Research ethics in the era of personalized medicine: updating science’s contract with society. Public Health Genomics. 2010;13(6):378-84. Epub 2010 Aug 31. PubMed PMID: 20805701.
  • Zimmern RL; Ickworth Group. Extending the reach of public health genomics: what should be the agenda for public health in an era of genome-based and “personalized” medicine? Genet Med. 2010 Dec;12(12):785-91. PubMed PMID: 21189494.
  • Chen JY, Xu H, Shi P, Culbertson A, Meslin EM. Ethics and privacy considerations for systems biology applications in predictive and personalized medicine. In Liu LA, Wei D, Li Yixue, Lei H, editors. Handbook of Research on Computational and Systems Biology: Interdisciplinary Applications. Hershey, PA: IGI Global, 2011. P. 1-27.
  • Schwartz PH. The value of information and the ethics of personal-genomic screening. [Open Peer Commentary] American Journal of Bioethics 2009; 9(4): 26-27.

Study Reports

  • Barrett PR, Meslin EM, Schwartz PR, Girod J, Odell JD, Quaid K, Wolf J. Report from the PredictER Expert Panel Meeting, November 2, 2007. Indiana University Center for Bioethics. January, 2008.

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