Attitudes among parents of persons with autism spectrum disorder towards information about genetic risk and future health | European Journal of Human…

Baxter AJ, Brugha TS, Erskine HE, Scheurer RW, Vos T, Scott JG. The epidemiology and global burden of autism spectrum disorders. Psychological Med. 2015;45:60113.

CAS Article Google Scholar

Sandin S, Lichtenstein P, Kuja-Halkola R, Hultman C, Larsson H, Reichenberg A. The heritability of autism spectrum disorder. JAMA. 2017;318:11824.

Article Google Scholar

Grove J, Ripke S, Als TD, Mattheisen M, Walters RK, Won H, et al. Identification of common genetic risk variants for autism spectrum disorder. Nat Genet. 2019;515:209444.

Google Scholar

Modabbernia A, Velthorst E, Reichenberg A. Environmental risk factors for autism: an evidence-based review of systematic reviews and meta-analyses. Mol Autism. 2017;8:13.

Article Google Scholar

Lord C, Brugha TS, Charman T, Cusack J, Dumas G, Frazier T, et al. Autism spectrum disorder. Nat Rev Dis Prim. 2020;6:5.

Article Google Scholar

Pugsley K, Scherer SW, Bellgrove MA, Hawi Z Environmental exposures associated with elevated risk for autism spectrum disorder may augment the burden of deleterious de novo mutations among probands. Mol Psychiatry. 2021; 121. https://doi.org/10.1038/s41380-021-01142-w.

Heil KM, Schaaf CP. The genetics of autism spectrum disorders a guide for clinicians. Curr Psychiatry Rep. 2012;15:9538.

Google Scholar

Schaefer G. Clinical genetic aspects of autism spectrum disorders. Int J Mol Sci. 2016;17:18014.

Article Google Scholar

Brnstrm R, Kasparian NA, Affleck P, Tibben A, Chang Y-m, Azizi E, et al. Perceptions of genetic research and testing among members of families with an increased risk of malignant melanoma. Eur J Cancer (Oxford, England: 1990). 2012;48:305262.

Thapar A, Rutter M Genetic advances in autism. J Autism Dev Disord. 2020; 112. https://doi.org/10.1007/s10803-020-04685-z.

Klitzman R. Am I my genes?: Questions of identity among individuals confronting genetic disease. Genet Med. 2009;11:8809.

Article Google Scholar

Palk AC, Dalvie S, de Vries J, Martin AR, Stein DJ. Potential use of clinical polygenic risk scores in psychiatryethical implications and communicating high polygenic risk. Philos Ethics Humanities Med 2019;14:748.

Google Scholar

Selkirk CG, McCarthy Veach P, Lian F, Schimmenti L, LeRoy BS. Parents perceptions of autism spectrum disorder etiology and recurrence risk and effects of their perceptions on family planning: recommendations for genetic counselors. J Genet Counseling. 2009;18:50719.

Article Google Scholar

Rew L, Mackert M, Bonevac D. A systematic review of literature about the genetic testing of adolescents. J Specialists Pediatr Nurs. 2009;14:28494.

Article Google Scholar

Hens K, Peeters H, Dierickx K. Genetic testing and counseling in the case of an autism diagnosis: a caregivers perspective. Eur J Med Genet. 2016;59:17.

Article Google Scholar

Lim Q, McGill BC, Quinn VF, Tucker KM, Mizrahi D, Patenaude AF, et al. Parents attitudes toward genetic testing of children for health conditions: a systematic review. Clin Genet. 2017;92:56978.

CAS Article Google Scholar

Rew L, Kaur M, McMillan A, Mackert M, Bonevac D. Systematic review of psychosocial benefits and harms of genetic testing. Issues Ment Health Nurs. 2017;31:116.

Google Scholar

Marchant GE, Robert JS Genetic testing for autism predisposition: Ethical Legal Social Challenges. Hous J Health L & Poly. 2009.

Chen L-S, Xu L, Huang T-Y, Dhar SU. Autism genetic testing: a qualitative study of awareness, attitudes and experiences among parents of children with autism spectrum disorders. Genet Med. 2013;15:27481.

Article Google Scholar

Erik P, Paul SA. On what we have learned and still need to learn about the psychosocial impacts of genetic testing. Hastings Cent Rep. 2019;49:S2S9.

Article Google Scholar

Wade CH. What is the psychosocial impact of providing genetic and genomic health information to individuals? An overview of systematic reviews. Hastings Cent Rep. 2019;49:S88S96.

Article Google Scholar

Andorno R. The right not to know: an autonomy based approach. J Med Ethics. 2004;30:4359. - discussion 9-40

CAS Article Google Scholar

Andorno R. Do our moral judgments need to be guided by principles? Camb Q Health Ethics. 2012;21:45765.

Article Google Scholar

Strohmaier J, Witt SH, Frank J, Lemme N, Flatau L, Streit F, et al. Attitudes toward the right to autonomous decisionmaking in psychiatric genetic testing: Controversial and contextdependent. Am J Med Genet Part B: Neuropsychiatr Genet. 2019;22:40111.

Google Scholar

Laegsgaard MM, Mors O. Psychiatric genetic testing: attitudes and intentions among future users and providers. Am J Med Genet Part B: Neuropsychiatr Genet. 2008;147:37584.

Article Google Scholar

Johannessen J, Nrland T, Hope S, Torske T, Hyland A, Strohmaier J, et al. Parents Attitudes toward Clinical Genetic Testing for Autism Spectrum DisorderData from a Norwegian Sample. Int J Mol Sci. 2017;18:107814.

Article Google Scholar

Wolff K, Nordin K, Brun W, Berglund G, Kvale G. Affective and cognitive attitudes, uncertainty avoidance and intention to obtain genetic testing: an extension of the theory of planned behaviour. Psychol Health. 2011;26:114355.

Article Google Scholar

Oien R, Nordahl-Hansen A Norway and Autism. Encyclopedia of autism spectrum disorders. 2017. p. 1-6.

Johannessen J, Nrland T, Bloss C, Rietschel M, Strohmaier J, Gjevik E, et al. Parents attitudes toward genetic research in autism spectrum disorder. Psychiatr Genet. 2016;26:7480.

Article Google Scholar

Carifio J, Perla RJ. Ten common misunderstandings, misconceptions, persistent myths and urban legends about likert scales and likert response formats and their antidotes. J Soc Sci. 2007;3:10616.

Google Scholar

Hauck WW, Miike R. A proposal for examining and reporting stepwise regressions. Stat Med. 1991;10:5.

Google Scholar

Yang H. The case for being automatic: introducing the automatic linear modeling (LINEAR) procedure in SPSS statistics. Mult Linear Regres Viewp. 2013;29:10.

CAS Google Scholar

Bortolotti L, Widdows H. The right not to know: the case of psychiatric disorders. J Med Ethics. 2011;37:6736.

Article Google Scholar

Robinson EB, Samocha KE, Kosmicki JA, McGrath L, Neale BM, Perlis RH, et al. Autism spectrum disorder severity reflects the average contribution of de novo and familial influences. Proc Natl Acad Sci USA. 2014;111:151615.

CAS Article Google Scholar

Picardi A, Gigantesco A, Tarolla E, Stoppioni V, Cerbo R, Cremonte M, et al. Parental burden and its correlates in families of children with autism spectrum disorder: a multicentre study with two comparison groups. Clin Pr Epidemiol Ment Health. 2018;14:14376.

Article Google Scholar

Saastamoinen A, Hyttinen V, Kortelainen M, Aaltio J, Auranen M, Ylikallio E, et al. Attitudes towards genetic testing and information: does parenthood shape the views? J Community Genet. 2020;11:46173.

Article Google Scholar

Feinberg J The Childs Right to an Open Future (1980). In: Feinberg J, editor. Freedom and Fulfillment: Philosophical Essays: Princeton University Press; 1992. p. 76-97.

Robertson S, Savulescu J. Is there a case in favour of predictive genetic testing in young children? Bioethics 2001;15:2649.

CAS Article Google Scholar

Laurie. In Defence of Ignorance: Genetic Information and the Right not to Know. Eur J Health Law. 1999;6:119-32.

Laurie G, Harmon S, Dove E Mason and McCall Smiths Law and Medical Ethics. 2019.

Singh JS Multiple Autisms. Spectrums of Advocacy and Genomic Science: University of Minnesota Press; 2015.

Happe F, Vital P. What aspects of autism predispose to talent? Philos Trans R Soc Lond B Biol Sci. 2009;364:136975.

Article Google Scholar

Mehling MH, Tass MJ. Severity of autism spectrum disorders: current conceptualization, and transition to DSM-5. J Autism Developmental Disord. 2016;46:200016.

Article Google Scholar

Russell G, Kapp SK, Elliott D, Elphick C, Gwernan-Jones R, Owens C. Mapping the autistic advantage from the accounts of adults diagnosed with autism: a qualitative study. Autism Adulthood. 2019;1:12433.

Article Google Scholar

Dragojlovic N, Kopac N, Borle K, Tandun R, Salmasi S, Ellis U, et al. Utilization and uptake of clinical genetics services in high-income countries: a scoping review. Health Policy. 2021;125:87787.

Article Google Scholar

Schupmann W, Jamal L, Berkman BE. Re-examining the ethics of genetic counselling in the genomic era. J Bioeth Inq. 2020;17:32535.

Article Google Scholar

Lunde Tensions in practice, knowledge and regulation: genetic counseling in Norway [PhD]. Bergen, Norway: University of Bergen; 2014.

Driver MN, Kuo SI, Dick DM. Genetic feedback for psychiatric conditions: where are we now and where are we going. Am J Med Genet B Neuropsychiatr Genet. 2020;183:42332.

Article Google Scholar

See the article here:
Attitudes among parents of persons with autism spectrum disorder towards information about genetic risk and future health | European Journal of Human...

Related Posts