C02 Ethics - Human/Animal Research and Clinical Practice| Volume 14, ISSUE 4, SUPPLEMENT , S37, April 2013

Parental knowledge of genetic research in pediatric pain

      There is a paucity of peer-reviewed clinical research investigating healthy infants donating DNA for minimal risk genetic research. The inclusion of healthy infants in genetic pain studies has been hindered by parental lack of knowledge and misinformation about the association between genetics and pain. To determine parental knowledge of genetic research in pediatric pain we conducted 30 semi-structured interviews with mothers or mother-father dyads 24-48 hours after the birth of their healthy, full-term infant. Parents were interviewed in their private rooms. Audio recording and field notes were collected. Data driven content analysis using selected principles of grounded theory was performed. Parental knowledge of genetic research in pediatric pain emerged as a process involving three interacting components, parent’s overall knowledge of genetics, parent’s knowledge of someone involved in genetic testing, and parent’s belief in the value of the research embedded within the context of personal benefit to the child. Sixty-six percent (n=18) of parents had no knowledge of genetics or genetic testing. Parents that expressed an understanding of genetics or genetic testing (n=11) received their information from personal prenatal care (n=6) or television (n=5). Ten percent (n=3) of parents received their knowledge of genetics from someone who experienced genetic testing. Thirteen percent (n=4) of parents felt there may be an association between genetics and pediatric pain and believed research to advance that understanding was worthwhile. Parents originally refusing to participate in genetic research in pediatric pain stated they might change their minds if there were direct benefits to their child (n=7). This research identified significant gaps in parental knowledge of genetic research in pediatric pain. Removing potential parental educational barriers is essential for supporting ethically sound, prospective, cohort studies of gene/environment interactions and for developing evidence-based pain therapies for this vulnerable population. Support: Sigma Theta Tau International Honor Society of Nursing #5971.