A survey-based study investigating opinions on genetic research among Swedish autistic individuals and parents of autistic children

Abstract

The opinions of the autism community are crucial for the future of genetic research. This study examines the attitudes of autistic adolescents, adults, and parents of autistic individuals toward genetic research in Sweden. We aimed to determine respondents views on genetic research in general, and to understand their expectations and concerns. For this aim, we conducted two online surveys with closed-ended and open-ended questions, one aimed at parents of autistic children and another for autistic adolescents and adults. A total of 871 parents and 213 autistics participated. We show that the attitudes towards genetic research are generally positive, with both respondent groups hoping that it will lead to improved interventions, enhanced quality of life, better educational opportunities, and increased support services. The autistic group valued research studies that would provide individual results from genetic research. However, thematic analysis of the respondents concerns on genetic research revealed that there are significant concerns about the potential misuse of genetic information, particularly regarding eugenics. Our results underscore the importance of engaging the autism community in genetic research to ensure its relevance and ethical integrity, ultimately facilitating the translation of research outcomes into tangible benefits for individuals with autism and their families. Lay abstractAutistic adolescents, adults, and parents of autistic individuals generally have a positive attitude towards genetic research in autism. However, many are concerned about the potential misuse of the research results. We surveyed 871 parents of autistic individuals and 213 autistic adolescents and adults in Sweden to understand their attitudes towards genetic research in autism. We asked whether they think genetic research in autism is positive and beneficial, what they hope the research will achieve, and if they have any concerns. Involving the autism community in Sweden is crucial for the future of genetic research in autism, ensuring it addresses their priorities and concerns. Overall, respondents had a positive view, hoping the findings could lead to better interventions, improved quality of life, enhanced educational opportunities, and stronger support services for autistic individuals and their families. However, many were worried about potential negative consequences, such as increased discrimination and the promotion of eugenics. These findings can guide researchers in designing future studies and highlight the importance of community involvement in research.