ABSTRACT
Genetic testing for autism has been a controversial topic within the autistic community. Opinions regarding the benefits, risks, and limitations of genetic testing often differ between autistic people, researchers, and healthcare providers. The present study sought to understand the beliefs, attitudes, and intentions to pursue genetic testing of autistic adults and compare perspectives of autistic people who have had genetic testing with those who have not. An international sample of 173 autistic adults (19 [11%] who had previously undergone autism-related genetic testing) completed an online survey with questions assessing beliefs, attitudes, and intentions to pursue genetic testing. Beliefs and attitudes about genetic testing varied widely across the sample. Autistic individuals who had received prior genetic testing had much more positive beliefs about autism-related genetic testing (d = 0.87, 95% CI [0.37, 1.36]) and attitudes toward genetic testing (d = 1.14, 95% CI [0.66, 1.61]) compared to those who had not received such testing, although there were no meaningful differences between those same groups regarding beliefs about genetic testing unrelated to autism (d = 0.02, 95% CI [-0.45, 0.49], p = 0.93). Intention to genetically test oneself or one's (hypothetical) children was also significantly predicted by autism-specific beliefs, attitudes, and prior genetic testing status. A large majority of the sample (78.6%) also agreed that autistic individuals would benefit from contact with a genetic counselor in certain situations. These findings suggest that the autistic community does not have a singular view of genetic testing, and for those Autistic individuals who are interested in pursuing genetic testing for themselves or a family member, genetic counselors have the potential to play a key role in clinical care.
ABSTRACT
Genetic medicine is considered a major part of the future of preventative care, offering evidence-based, effective interventions to improve health outcomes and reduce morbidity and mortality, especially regarding hereditary cancer screening. Identification of individuals who would benefit from screening is key to improving their cancer-related healthcare outcomes. However, patients without insurance, of historically underserved races, of lower socioeconomic status, and in rural communities have lower access to such care. Barriers to access lead to populations having higher rates of undetected hereditary cancer, and consequently more severe forms of cancer. With an already-established reach, student-run free clinics can work with genetic counseling training programs to incorporate genetic medicine into their workflow. Such partnerships will (1) make genetic care more accessible with goals of improving patient morbidity, mortality, and health outcomes, (2) offer robust educational experiences for genetic counseling learners, particularly in understanding social determinants of health and barriers to care, and (3) actively combat the growing racial and geographic gaps in genetic care. Our study presents how one student-run free clinic implemented genetic counseling into its primary care workflow to improve access to genetics services. We present two examples of how genetic counseling improved patients' medical care. We also identify obstacles encountered during this program's development, as well as solutions-those we incorporated and possible considerations for other clinics. With the hope that other clinics can use this paper to design similar partnerships, we aim to lessen the gap between sickness and screening.
