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Keywords:

  • Infant;
  • pediatric;
  • genetic research;
  • parents;
  • knowledge

Abstract

Purpose

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 private 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 process parents utilize to donate their healthy infant's DNA for minimal-risk genetic 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.