H. D. Smith

Purpose This systematic review aims to identify factors that influence parents’ decisions regarding pediatric diagnostic and predictive genetic testing (DT/PT). Factors are integrated into a conceptual model of decision-making. Implications for genetic counseling, research, and ethics are derived. Methods PubMed, PsychInfo, WebofScience and references of related reviews were searched for original publications between 2000 and 2023. Extracted factors were categorized into an existing model. Results Of 5843 publications, 56 met inclusion criteria. The included studies differentiate between DT, traditional, and expanded PT and describe factors impacting parental decisions on both to have the child genetically tested and to be informed about additional findings. Factors included: 1. benefits/hopes, 2. worries/concerns, 3. values and beliefs, 4. individual circumstances, and 5. emotional states. Conclusion Our work extends an existing empirical decision model of family decisions about genome sequencing to genetic testing in pediatrics in general, adding the categories “individual circumstances” and “emotional states”. The factors can be further integrated into the Health Belief Model; the importance of emotional states is reflected in dual-process theories, such as Fuzzy Trace Theory. Research is required on emotional states, differences between DT and PT, parents’ decisions about result disclosure, and dyadic variables as decision-making predictors.

Recent writers on negligence and culpable ignorance have argued that there are two kinds of culpable ignorance: tracing cases, in which the agent’s ignorance traces back to some culpable act or omission of hers in the past that led to the current act, which therefore arguably inherits the culpability of that earlier failure; and non-tracing cases, in which there is no such earlier failure, so the agent’s current state of ignorance must be culpable in its own right. An unusual but intriguing justification for blaming agents in non-tracing cases is provided by Attributionism, which holds that we are as blameworthy for our non-voluntary emotional reactions, spontaneous attitudes, and the ensuing patterns of awareness as we are for our voluntary actions. The Attributionist explanation for why some non-tracing cases involve culpability is an appealing one, even though it has limited scope. After providing a deeper account of why we should take the Attributionist position seriously, I use recent psychological research to argue for a new account of the conditions under which agents are culpable for straightforward instances of blameworthy acts. That account is extended to blameworthiness for non-voluntary responses. I conclude that even when the agent’s failure to notice arises from a nonvoluntary objectionable attitude, very few such cases are ones in which Attributionism implies that the agent is blameworthy for her act