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Parentsattitudes toward genetic research in autism spectrum disorder

Johannessen, Jarle; Nærland, Terje; Bloss, Cinnamon; Rietschel, Marcella; Strohmaier, Jana; Gjevik, Elen; Heiberg, Arvid; Djurovic, Srdjan; Andreassen, Ole A.

doi: 10.1097/YPG.0000000000000121

Objective Genetic research in autism spectrum disorder (ASD) is mainly performed in minors who are legally unable to provide consent. Thus, knowledge of the attitudes, fears, and expectations toward genetic research of the parents is important. Knowledge of the attitudes toward genetic research will improve cooperation between researchers and participants, and help establish confidence in ASD genetic research. The present study aimed to assess these attitudes.

Materials and methods Questionnaire-based assessments of attitudes toward genetic research and toward procedures in genetic research of n=1455 parents of individuals with ASD were performed.

Results The main motivation for participation in genetic research is to gain more knowledge of the causes and disease mechanisms of ASD (83.6%), and to contribute toward development of improved treatment in the future (63.7%). The parents also had a positive attitude towards storing genetic information (54.3%) and they requested confidentiality of data (82.9%) and expressed a need to be informed about the purpose (89%) and progress of the research (83.7%). We found a slightly more positive attitude to participation in genetic research among older parents (P=0.015), among fathers compared with mothers (P=0.01), among parents of girls compared with boys (P=0.03), and infantile autism compared with Asperger syndrome (P=0.002). However, linear regression analysis showed that parent and child characteristics seem to have too small an influence on attitudes toward genetic research to be of any relevance (R 2=0.002–0.02).

Conclusion Parents of children with ASD have, in general, a very positive attitude toward genetic research. Data confidentiality is important, and they express a need for information on the purpose and progress of the research.

aNORMENT, K.G. Jebsen Psychosis Research Centre, Institute of Clinical Medicine, University of Oslo

bDivision of Mental Health and Addiction

cDivision of Medical Genetics

dNevSom, Department of Rare Disorders and Disabilities, Oslo University Hospital

eAutism Society Norway, Oslo, Norway

fDepartment of Genetic Epidemiology in Psychiatry, Central Institute of Mental Health, Medical Faculty Mannheim, University of Heidelberg, Germany

gDepartment of Family Medicine & Public Health, University of California, San Diego, USA

* Jarle Johannessen and Terje Nærland contributed equally to the writing of this article.

Correspondence to Cand. Philol. Jarle Johannessen, Autism Society Norway, POB 6726 Etterstad N-0609 Oslo, Norway Tel: +47 230 54573; fax: +47 230 54551; e-mail:

Received July 17, 2015

Accepted January 19, 2016

Copyright © 2016 Wolters Kluwer Health, Inc. All rights reserved.