Understanding of genetic test results for osteogenesis imperfecta by attorneys and child welfare workers in non-accidental injury cases

Abstract

This dissertation research explored the ways in which child welfare workers and attorneys involved in non-accidental injury (NAI) cases understand and use genetic test results for osteogenesis imperfecta (OI). 14 semi-structured expert interviews with 14 professionals known to be involved in OI vs. NAI cases were recorded, transcribed, coded, and analyzed, in order to help inform a larger, more wide-scale quantitative survey. The on-line survey included 46 questions, and participants were drawn from a number of sources. A total of 192 participants (both attorneys and child welfare workers) took the survey, 102 of which completed every question, 185 of whom completed more than 70% of the survey. Results suggested that some professionals involved in OI vs. NAI cases may not be equipped to understand genetic test results that they are returned, and they may not be able to get help from an appropriately trained scientific expert to aid them in understanding the result. The majority of participants agreed that educational or policy/practice recommendations could be useful in OI vs. NAI cases, and that most professionals in their field would be interested in learning more about OI and its relationship to NAI. Finally, a set of suggestions are proposed, outlining different recommendations for education, policy, and practice. Many limitations in this study were identified that limit the ability to generalize the findings beyond the study population.