Method: U. S. adults recruited from Amazon Mechanical Turk (N=3,090; mean age=31.6) read a hypothetical scenario in which they had a newborn and a brochure with information about DMD and DMD testing. Scenarios experimentally varied newborns’ vulnerability to DMD (no DMD family history; DMD family history; family history of an unrelated neurological disease, epilepsy; or premature birth). Brochures experimentally varied the stated goal of DMD testing (research versus family benefit). Survey items measured intent to test for DMD.
Result: Most participants wanted to test for DMD (63.6%), and participants whose (hypothetical) newborns had a DMD family history were much more likely to choose testing than those with no such history (OR=3.07, p<0.001). More importantly, participants whose newborns had unrelated health threats were also more likely to choose DMD testing (epilepsy: OR=1.43, p<0.05; premature birth: OR=1.57, p<0.01). When scenarios included either a DMD or an epilepsy family history, participants were less likely to choose testing that was presented with a research goal versus a personal/family goal (DMD history: OR=0.60, p<0.05; epilepsy history: OR=0.66, p<0.05).
Conclusion: Our results suggest that parents will be more interested in optional testing for a disease when they perceive their child to be vulnerable, even if that vulnerability stems from other conditions unrelated to the disease in question (e.g., family history of other diseases, premature birth). When the DMD newborn screening goal focused on research benefits, such a perceived vulnerability lessened interest in testing. Future newborn screening policy should consider how the goals of testing are stated, and the potential for overuse based on a gist perception of vulnerability that is not clinically related to the conditions for which tests are being offered.