Parents' Attitudes toward Clinical Genetic Testing for Autism Spectrum Disorder-Data from a Norwegian Sample

被引:26
|
作者
Johannessen, Jarle [1 ,5 ]
Naerland, Terje [1 ,4 ]
Hope, Sigrun [1 ,6 ]
Torske, Tonje [10 ]
Hoyland, Anne Lise [7 ,8 ]
Strohmaier, Jana [9 ]
Heiberg, Arvid [3 ]
Rietschel, Marcella [9 ]
Djurovic, Srdjan [1 ,3 ,11 ]
Andreassen, Ole A. [1 ,2 ]
机构
[1] Univ Oslo, KG Jebsen Ctr Psychosis Res, NORMENT, N-0424 Oslo, Norway
[2] Oslo Univ Hosp, Div Mental Hlth & Addict, N-0315 Oslo, Norway
[3] Oslo Univ Hosp, Dept Med Genet, N-0424 Oslo, Norway
[4] Oslo Univ Hosp, Dept Rare Disorders & Disabil, NevSom, N-0424 Oslo, Norway
[5] Autism Soc Norway, N-0609 Oslo, Norway
[6] Oslo Univ Hosp, Dept Neurohabil, N-0424 Oslo, Norway
[7] Norwegian Univ Sci & Technol, Dept Mental Hlth, Reg Ctr Child & Youth Mental Hlth & Child Welf, Fac Med & Hlth Sci, N-7491 Trondheim, Norway
[8] Trondheim Reg & Univ Hosp, St Olavs Hosp, Dept Pediat, N-7006 Trondheim, Norway
[9] Heidelberg Univ, Med Fac Mannheim, Cent Inst Mental Hlth, Dept Genet Epidemiol Psychiat, D-68159 Mannheim, Germany
[10] Vestre Viken Hosp Trust, Div Mental Hlth & Addict, N-3004 Drammen, Norway
[11] Univ Bergen, Dept Clin Sci, N-5021 Bergen, Norway
关键词
ASD; autism; Asperger syndrome; clinical genetic testing; parents; attitudes; ethics; genetic counselling; CHROMOSOMAL MICROARRAY ANALYSIS; RISK-FACTORS; CHILDREN; INDIVIDUALS; PERCEPTIONS; EXPERIENCES; STOPPAGE;
D O I
10.3390/ijms18051078
中图分类号
Q5 [生物化学]; Q7 [分子生物学];
学科分类号
071010 ; 081704 ;
摘要
Clinical genetic testing (CGT) of children with autism spectrum disorder (ASD) may have positive and negative effects. Knowledge about parents' attitudes is needed to ensure good involvement of caregivers, which is crucial for accurate diagnosis and effective clinical management. This study aimed to assess parents' attitudes toward CGT for ASD. Parent members of the Norwegian Autism Society were given a previously untested questionnaire and 1455 answered. Linear regression analyses were conducted to evaluate contribution of parent and child characteristics to attitude statements. Provided it could contribute to a casual explanation of their child's ASD, 76% would undergo CGT. If it would improve the possibilities for early interventions, 74% were positive to CGT. Between 49-67% agreed that CGT could have a negative impact on health insurance, increase their concern for the child's future and cause family conflicts. Parents against CGT (9%) were less optimistic regarding positive effects, but not more concerned with negative impacts. The severity of the children's ASD diagnosis had a weak positive association with parent's positive attitudes to CGT (p-values range from <0.001 to 0.975). Parents prefer that CGT is offered to those having a child with ASD (65%), when the child's development deviates from normal (48%), or before pregnancy (36%). A majority of the parents of children with ASD are positive to CGT due to possibilities for an etiological explanation.
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页数:14
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