Information and Informed Consent for Neonatal Screening: Opinions and Preferences of Parents

Abstract

If the neonatal screening program is to be expanded, parents would prefer for information about the program be given during pregnancy. In addition, they preferred an opt-out consent approach, on condition that screening was for the purpose of preventing irreversible harm. Parental opinion was divided on this issue if the aim of screening were to be widened.

Consent for newborn screening: parents’ and health-care professionals’ experiences of consent in practice

“…Thus, although there is still room for discussion about the specific content of parental education, whose responsibility it is to offer it and effective ways of providing it, 9,17,36 our findings add support to the importance of efforts to ensure parents go into the birthing process already knowing about NBS. 27 These results are not new, but they do raise interesting questions for researchers and those responsible for NBS programs. For example, findings challenge us to explore what kind of information seeking parents engage in before labor.…”

“…17,29 Results are consistent with a growing literature revealing very supportive parental views of NBS. 27,29,[35][36] It is important to appreciate that the majority of parents in NBS programs are 'satisfied customers': 37 most will receive screen negative results, and in the case of acceptance of screening, their understanding is not put to the test. It highlights the importance, in research and quality assurance studies, of seeking out those participants who are most likely to provide a discordant view, however infrequent this is.…”

“…23,24 To date, the literature concerning consent and newborn screening has generally focused on attitudes toward consent policy. 7,[25][26][27][28][29] Although this is revealing, occasionally showing conflicting attitudes toward the need for consent, 6,30,31 there is a lack of descriptive research that depicts how the offer of NBS is made to parents, making it difficult to determine the experience of consent in practice. Understanding the experiences of those actually involved in the consent process may provide valuable descriptive information for NBS programs and providers.…”

Can a decision aid enable informed decisions in neonatal nursery recruitment for a fragile X newborn screening study?

“…1 Most parents accept the trade-off between the need for rapid action and the loss of parental autonomy, 2 although cross-country variations exist. [3][4][5] Some ethicists suggest that the possibility of whole-genome or whole-exome sequencing and the breadth of information potentially available will only heighten the debate, forcing mandatory screening to be reconsidered and strengthening the case for informed consent. 6,7 Newborn screening pilot programs can be conducted by states without parental consent if the study meets institutional review board (IRB) criteria for minimal risk, protection of rights and welfare, and impracticability.…”

Developing a Conjoint Analysis Survey of Parental Attitudes Regarding Voluntary Newborn Screening

“…21,26,28,30,41 Some parents also support screening for conditions that do not require immediate treatment (hereditary hemochromatosis 23 and hereditary breast and ovarian cancer 27 ), for which the benefits of asymptomatic treatment are uncertain (cystic fibrosis 22,27,30,36,38,45 ), or for which no treatment is available (Duchenne muscular dystrophy 10,26,30,31,37,44 ). However, some parents feel that screening for untreatable conditions should be voluntary.…”