Academic journal article Journal of Nursing Scholarship

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

Academic journal article Journal of Nursing Scholarship

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

Article excerpt

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). Although most of the literature exploring parental attitudes and beliefs about participa- tion in genetic studies focused on genetic testing rather than genetic research, two articles looked specifically at parental attitudes toward genetic research.

Nechuta et al. (2009) assessed attitudes of a multi- ethnic sample of pregnant women about the smallest amount of compensation required for their participation in five data collection procedures: a 45-min in-person interview, a 15-min telephone interview, maternal and infant medical record abstraction, and an infant physi- cal examination. Willingness to participate in decreasing order were highest for telephone interview (83%), in- person interview (60%), infant examination (57%), and maternal (56%) and infant (54%) medical records. Ed- ucation greater than high school was associated with in- creased refusal for infant physical examination. Refusal of all procedures was significant among more highly ed- ucated women. About 9% to 34% of pregnant women, depending on the procedure, stated they would not par- ticipate in noninvasive research procedures such as med- ical record abstraction and infant examination, even with compensation. While this study was not population based and therefore may not be generalizable to all pregnant women and the data collection occurred in clinics where pregnant women may feel healthcare providers sup- port the study, it is notable that a significant number of women were quite resistant to noninvasive medical research during pregnancy and infancy. This is an impor- tant message for pregnancy and newborn research.

Gillam et al. (2006) conducted 17 semistructured in- terviews with parents of primary school children who were participating in a pilot hearing test following otitis media with effusion. The focus of the interviews was to explore parents' understanding of issues surrounding the participation of their infants in genetic research. …

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