Factors Influencing Parents’ Decision to Donate Their Healthy Infant's DNA for Minimal-Risk Genetic Research

AbstractPurpose: To examine factors that influence a parent's decision to donate their healthy infant's DNA for minimal-risk genetic research.Design: Grounded theory, using semi-structured interviews conducted with 35 postpartum mother or mother-father dyads in an urban teaching hospital. Data were collected from July 2011 to January 2012.Methods: Audiorecorded semistructured interviews were conducted in pri- vate rooms with mothers or mother-father dyads 24 to 48 hr after the birth of their healthy, full-term infant. Data-driven content analysis using selected principles of grounded theory was performed.Findings: Parents' willingness to donate their healthy infant's DNA for minimal-risk pediatric genetic research emerged as a process involving three interacting components: the parents, the scientist, and the comfort of the child embedded within the context of benefit to the child. The purpose of the study and parents' perception of their commitment of time and resources determined their willingness to participate. The scientist's ability to communicate trust in the research process influenced parents' decisions. Physical discomfort of the child shaped parents' decision to donate DNA. Parental perception of a direct benefit to their child affected their willingness to discuss genetic research and its outcomes.Conclusions: Significant gaps and misunderstandings in parental knowledge of pediatric genetic research may affect parental willingness to donate their healthy child's DNA.Clinical Relevance: Nurses knowledgeable about the decision-making pro- cess parents utilize to donate their healthy infant's DNA for minimal-risk ge- netic research and the factors influencing that decision are well positioned to educate parents about the role of genetics in health and illness and reassure potential research participants of the value and safeguards in pediatric genetic research.Historically pediatric genetic research has been conducted on children who are at risk for or potential carriers of genetic conditions (Liem, Cole, Pelligra, Mason, & Thompson, 2010). The primary justification for the re- cruitment of at-risk infants into genetic research has been that the benefits the infant will receive from participa- tion in the research study outweigh the potential study risks (Wilfond & Ross, 2009). The recruitment of healthy infants in genetic research is considered more challeng- ing due to parental attitudes and concerns about the risks for their healthy infant. This article will explore the pro- cess and factors that influence parents' decision to do- nate their healthy infant's DNA for minimal-risk genetic research studies.There is a paucity of literature discussing the prob- lems of recruiting healthy children into nontherapeu- tic research ( Gammelgaard, Knudsen, & Bisgaard, 2006). The National Children's Study (NCS) is a longitudinal cohort study initiated by the U.S. National Institute of Child Health and Human Development (NICHD) in col- laboration with the Centers for Disease Control and Prevention, U.S. Environmental Protection Agency, and National Institute of Environmental Health Sciences. The study will examine the effects of genetic and environ- mental influences on the health and development of more than 100,000 children across the United States, following them from before birth until age 21 (NCS, 2012). Authorized by Congress in 2000 and launched in January 2009, increasing projected costs (from an esti- mated $3.1 billion to about $6.7 billion; Belluck, 2010) and low enrollment (Savitz & Ness, 2010) are among the problems that hindered the study's advancement. As of July 2012, the study spent $1 billion to enroll 3,650 participants ($273,972.00 per child; NCS, 2012).The unexpected difficulties the NCS is experiencing in recruitment may be partially explained by parents' lack of knowledge and their attitudes and misconceptions surrounding pediatric genetic research ( Gillam, Poulakis, Tobin, & Wake, 2006). …