An Integrated Model of Emotions, Attitudes, and Intentions Associated With Undergoing Autism Genetic Testing
DOI:
https://doi.org/10.17140/PCSOJ-1-105Keywords:
Autism spectrum disorders, Genetic testing, Emotional factorsAbstract
Introduction: With increasing availability of genetic testing for various disorders, individuals and family members at risk are facing more decisions regarding current and emerging tests. However, no study has examined psychological determinants associated with decisions to undergo genetic testing for Autism Spectrum Disorders (ASD). The purpose of this study is to propose an integrated theoretical model for undergoing ASD genetic testing and examine psychological factors, attitudes and intention regarding autism genetic testing.
Method: A theoretical framework specifically designed to explain emotional factors that may influence parents’ decisions to undergo autism genetic testing is proposed, which contains three key constructs, i.e., affect-type variables, attitudes and intention. Using a sample of parents with autistic children in Taiwan (N=444), we conduct a two-step Structural Equation Modeling (SEM) analysis to assess whether the data supported the hypothesized model.
Results: The greater genetic test-related anxiety parents have, the more likely they might want to take their children to undergo the test. Similarly, the more fear or guilt parents have, the less likely they would warrant the test. Attitude does not predict parents’ intention in this study. Conclusions: Our proposed model and findings from this study provided support to the need of pre-test counseling and genetic education among ASD – affected populations in Taiwan. It is imperative to build empathetic, caring, trusting professional relationships and consider emotional factors when performing genetic counseling among parents of children with ASD.
References
Miller DT, Adam MP, Aradhya S, et al. Consensus statement: chromosomal microarray is a first-tier clinical diagnostic test for individuals with developmental disabilities or congenital anomalies. America Journal of Human Genetics. 2010; 86(5): 749-764. doi: 10.1016/j.ajhg.2010.04.006
Lerman C, Croyle RT, Tercyak KP, Hamann H. Genetic test-ing: psychological aspects and implications. Journal of Con-sulting and Clinical Psychology. 2002; 70(3): 784-797. doi: 10.1037/0022-006X.70.3.784
Metcalfe A, Werrett J, Burgess L, Clifford C. Psychosocial impact of the lack of information given at referral about famil-ial risk for cancer. Psycho-oncology. 2007; 16(5): 458-465. doi: 10.1002/pon.1081
Jones DL, Clayton EW. The role of distress in uptake and response to predisposition genetic testing: the BMPR2 experi-ence. Genetic Testing snd Molecular Biomarkers. 2012; 16(3): 203-209. doi: 10.1089/gtmb.2011.0059
Vadaparampil ST, Ropka M, Stefanek ME. Measurement of psychological factors associated with genetic testing for heredi-tary breast, ovarian and colon cancers. Familial Cancer. 2005; 4(2): 195-206. doi: 10.1007/s10689-004-1446-7
Green JM, Hewison J, Bekker HL, Bryant LD, Cuckle HS. Psychosocial aspects of genetic screening of pregnant women and newborns: a systematic review. Health Technology Assess-ment. 2004; 8(33): 1-109. doi: 10.3310/hta8330
Heshka JT, Palleschi C, Howley H, Wilson B, Wells PS. A systematic review of perceived risks, psychological and behav-ioral impacts of genetic testing. Genetics in Medicine. 2008; 10(1): 19-32. doi: 10.1097/GIM.0b013e31815f524f
Miles JH. Autism spectrum disorders a genetics review. Genetics in Medicine: Official Journal of the American Col-lege of Medical Genetics. 2011; 13(4): 278-294. doi: 10.1097/ GIM.0b013e3181ff67ba
Vande Wydeven K, Kwan A, Hardan AY, Bernstein JA. Un-derutilization of genetics services for autism: the importance of parental awareness and provider recommendation. Journal of Genetic Counseling. 2012; 21(6): 803-813. doi: 10.1007/ s10897-012-9494-x
Monaco AP, Bailey AJ. Autism: the search for suscep-tibility genes. Lancet. 2001; 358: S3. doi: 10.1016/S0140- 6736(01)07016-7
Ozonoff S, Young GS, Carter A, et al. Recurrence risk for autism spectrum disorders: a baby siblings research consor-tium study. Pediatrics. 2011; 128(3): e488-e495. doi: 10.1542/ peds.2010-2825
Chen LS, Xu L, Huang TY, Dhar SU. Autism genetic test-ing: a qualitative study of awareness, attitudes, and experienc-es among parents of children with autism spectrum disorders. Genetics in Medicine: Official Journal of the American Col-lege of Medical Genetics. 2013; 15(4): 274-281. doi: 10.1038/ gim.2012.145
Pasacreta JV. Psychosocial issues associated with genetic testing for breast and ovarian cancer risk: an integrative review. Cancer Investigation. 2003; 21(4): 588-623.
Skinner D, Choudhury S, Sideris J, et al. Parents decisions to screen newborns for fmr1 gene expansions in a pilot research project. Pediatrics. 2011; 127(6): e1455-e1463. doi: 10.1542/ peds.2010-3078
Myers SM, Johnson CP. American academy of pediatrics council on children with disabilities. management of children with autism spectrum disorders. Pediatrics. 2007; 120(5): 1162- 1182.
Schaefer GB, Mendelsohn NJ, Professional P, Guidelines C. Clinical genetics evaluation in identifying the etiology of autism spectrum disorders. Genetics In Medicine. 2008; 10(4): 301- 305. doi: 10.1097/GIM.0b013e31816b5cc9
Shen Y, Dies KA, Holm IA, et al. On behalf of the autism consortium clinical genetics/dna diagnostics collaboration: clin-ical genetic testing for patients with autism spectrum disorders. Pediatrics. 2010; 125(4): e727-735.
Giarelli E, Reiff M. Mother’s appreicaiton of chromosomal microarrary analysis for autism specturm disorder. Journal of Special Pediatrics and Nursing. 2015. doi: 10.1111/jspn.12121
Johnson HM, Gaitanis J, Morrow EM. Genetics in autism di-agnosis: adding molecular subtypes to neurobehavioral diagno-ses. Medicine and health, Rhode Island. 2011; 94(5): 124-126.
Schaefer GB, Mendelsohn NJ, Professional P, Guidelines C. Clinical genetics evaluation in identifying the etiology of au-tism spectrum disorders: 2013 guideline revisions. Genetics in Medicine: Official Journal of the American College of Medical Genetics. 2013; 15(5): 399-407.
Marchant GE, Robert JS. Genetic testing for autism predis-postion: ethical, legal, and soical challenges. Houston Journal of Health Law and Policy. 2009; 9: 203-235.
Lerman C, Schwartz MD, Lin TH, Hughes C, Narod S, Lynch HT. The influence of psychological distress on use of ge-netic testing for cancer risk. Journal of Consulting and Clinical Psychology. 1997; 65(3): 414-420.
Jordan BR, Tsai DF. Whole-genome association studies for multigenic diseases: ethical dilemmas arising from commercial-ization--the case of genetic testing for autism. Journal of Medi-cal Ethics. 2010; 36(7): 440-444. doi: 10.1136/jme.2009.031385
Maya I, Davidov B, Gershovitz L, et al. Diagnostic utility of array-based comparative genomic hybridization (acgh) in a pre-natal setting. Prenatal diagnosis. 2010; 30(12-13): 1131-1137. doi: 10.1002/pd.2626
McMahon WM, Baty BJ, Botlkin J. Genetic couseling and ethical issues for autism. American Journal of Meidical Genet-ics. C Seminar Medicical Genetics. 2006; 142(1): C52-2C57. doi: 10.1002/ajmg.c.30082
Reiff M, Bernhardt BA, Mulchandani S, et al. What does it mean?: uncertainties in understanding results of chromosomal microarray testing. Genetics in Medicine. 2012; 14(2): 250-258. doi: 10.1038/gim.2011.52
Lerman C, Croyle RT. Emotional and behavioral responses to genetic testing for susceptibility to cancer. Oncology. 1996; 10(2): 191-195.
Gooding HC, Organista K, Burack J, Biesecker BB. Genetic susceptibility testing from a stress and coping perspective. Social Science and Medicine. 2006; 62(8): 1880-1890. doi: 10.1016/j. socscimed.2005.08.041
Skinner D, Sparkman KL, Bailey DB Jr. Screening for fragile x syndrome: parent attitudes and perspectives. Genet-ics in Medicine: Official Journal of the American College of Medical Genetics. 2003; 5(5): 378-384. doi: 10.1097/01. GIM.0000086480.69309.1E
Ajen I. Theory of planned behavior. Organizational Behav-ior and Human Decision Processes. 1991; 50: 179-211. doi: 10.1016/0749-5978(91)90020-T
Leventhal HLE, Cameron L. Handbook of health psychol-ogy. In: Mahwah NJ, ed. Lawrence Erlbaum Associates; 2001.
Lazarus RSFS. Stress, Appraisal, and Coping. New York: Springer Publishing Company, Inc; 1984.
Wolff K, Nordin K, Brun W, Berglund G, Kvale G. Affec-tive and cognitive attitudes, uncertainty avoidance and intention to obtain genetic testing: an extension of the theory of planned behaviour. Psychology & Health. 2011; 26(9): 1143-1155. doi: 10.1080/08870441003763253
Patricia G. Theory in health promotion research and practice. Sudbury, MA: Jones and Bartlett Publishers; 2010.
Archibald AD, Jaques AM, Wake S, Collins VR, Cohen J, Metcalfe SA. It’s something i need to consider”: decisions about carrier screening for fragile x syndrome in a population of non-pregnant women. American Journal of Medical Genetics. Part A. 2009; 149A(12): 2731-2738. doi: 10.1002/ajmg.a.33122
Bailey DB Jr, Bishop E, Raspa M, Skinner D. Caregiver opin-ions about fragile X population screening. Genetics in Medicine: Official Journal of the American College of Medical Genetics. 2012; 14(1): 115-121. doi: 10.1038/gim.0b013e31822ebaa6
Rogers RW. Social Psychophysiology. New York: Guilford Press; 1983.
Williams K. Fear appeal theory. Research in Business and Economics Journal. 2012; 5.
Witte K,Allen M.Ameta-analysis of fear appeals: implications for effective public health campaigns. Health Education & Behav-ior. 2000; 27(5): 591-615. doi: 10.1177/109019810002700506
Sun X, Allison C, Matthews FE, et al. Prevalence of autism in Mainland China, Hong Kong and Taiwan: a systematic re-view and meta-analysis. Molecular Autism. 2013; 4(1): 7. doi: 10.1186/2040-2392-4-7
Lerman C, Croyle RT, Tercyak KP, Hamann H. Genetic test-ing: psychological aspects and implications. Journal of Consult-ing and Clinical Psychology. 2002; 70(3): 784-797.
Encyclopedia of Psychology. Bonnie R. Strickland. Gale Group, Inc; 2001.
McAllister M, Davies L, Payne K, Nicholls S, Donnai D, Ma-cLeod R. the emotional effects of genetic diseases: implications for clinical genetics. American Journal of Medical Genetics. Part A. 2007; 143A(22): 2651-2661. doi: 10.1002/ajmg.a.32013
Eagly A, Chaiken S. The Psychology of Attitudes. Fort Worth, TX: Harcourt Brace Jovanovich; 1993.
Price AS. Primary and secondary prevention of colorectal cancer. Gastroenterology Nursing: The Official Journal of the Society of Gastroenterology Nurses and Associates. 2003; 26(2): 73-81.
Lierman LM, Young HM, Kasprzyk D, Benoliel JQ. Predict-ing breast self-examination using the theory of reasoned action. Nursing research. 1990; 39(2): 97-101.
Frost S, Myers LB, Newman SP. Genetic screening for alzheimer’s disease: what factors predict intentions to take a test? Behavioral Medicine. 2001; 27(3): 101-109. doi: 10.1080/08964280109595776
Chen LS, Goodson P. Public Health genomics knowledge and attitudes: a survey of public health educators in the United States. Genetics in Medicine: Official Journal of the American College of Medical Genetics. 2007; 9(8): 496-503. doi: 10.1097/ GIM.0b013e31812e95b5
Ho SMY, Chan CLW, Chan CL, Kwan K, Tsui YK. Deci-sional consideration of hereditary colon cancer genetic test re-sults among Hong Kong Chinese adults. Cancer Epidemiology, Biomarkers & Prevention. 2003; (12): 426-432
Xu L, Lu, W. Emotional factors affecting Taiwanese parent’s decision-making regarding autism. Genetic Testing: Internation-al Journal of Recent Scientific Research. 2015; 6(5): 4141-4148.
Markus A. Principles and practice of structural equa-tion. Structural equation modeling by Rex B. Kline: Strucutal Equation Modeling: A Multidisicplinary Journal. 2012; 19(3): 509-512.
Yuan KH, Bentler PM. Finite normal mixture SEM analysis by ftting multiple conventional SEM models. Sociol Methodol. 2010; 40(1): 191-245. doi: 10.1111/j.1467-9531.2010.01224.x
Buhi ER, Goodson P, Neilands TB. Structural equation modeling: a primer for health behavior researchers. American Journal of Health Behavior. 2007; 31(1): 74-85. doi: 10.5993/ AJHB.31.1.8
Mega C, Ronconi L, Beni R. What makes a good student? how emotions, self-regulated learning, and movivaiton contrib-ute to academic achievement. Journal of Educational Psychol-ogy. 2013; 106(1): 121-131.
Green M, Peterson S, Baker M. Effect of a Computer-Based Decision Aid on Knowledge, Perceptions, and Intentions About Genetic Testing for Breast Cancer Suscetpiblablity. JAMA. 2004; 292(4): 442-452.
Peshkin BN, DeMarco TA, Garber JE, et al. Brief Assess-ment of Parents’ Attitudes toward Testing Minor Children for Hereditary Breast/ovarian Cancer Genes: Development and Validation of the Pediatric BRCA1/2 Testing Attitudes Scale (P-TAS). Jounral of Pediatric Psychology. 2009; 34(6): 627-638. doi: 10.1093/jpepsy/jsn033
Schreiber JB, Nora A, Stage FK, et al. Reporting structural equation modeling and confirmatory factor analysis results: a review. The Journal of Educational Research. 2010; 99(2): 323- 337.
Buhi ER, Goodson P, Neilands TB, Blunt H. Adolescent sexual abstinence: a test of an integrative theoretical framework. Health Educauiton & Behavior. 2011; 38(1): 63-79.
Hair JF, Black, WC, Babin, BJ, et al.Multivariate Data Anal-ysis. Upper Saddle River, NJ: Prentice Hal; 2006.
Schumacker RM. Interaction and Nonlinear Effects inStruc-tural Equation Modeling. Mahwah: Lawrence Erlbaum Associ-ates; 1998.
Wayne Mk. Factors influencing intention to obtain a genetic test for prostate cancer risk: a structural equation modeling ap-proach [dissertation]. Philadelphia, PA: Drexel University; 2004.
Chin W. Commentary: issues and opinions on structural equation modeling. MIS Quarterly. 1998; 22(1): 1-14.
Downloads
Published
How to Cite
Issue
Section
License

This work is licensed under a Creative Commons Attribution 4.0 International License.
All content published in Psychology and Cognitive Sciences (PCS) is licensed under the Creative Commons Attribution 4.0 International License (CC BY 4.0). This license allows anyone to copy, distribute, transmit, and adapt the work — including for commercial purposes — provided appropriate credit is given to the original author(s) and source.