Informed Choice for Newborn Blood Spot Screening in the United Kingdom: A Survey of Parental Perceptions.

Department of Epidemiology and Community Medicine, University of Ottawa, Ottawa, Canada
PEDIATRICS (Impact Factor: 5.3). 11/2012; DOI: 10.1542/peds.2012-1479
Source: PubMed

ABSTRACT OBJECTIVE:In the United Kingdom, newborn blood spot screening proceeds on the basis of consent based on an informed choice. However, little is known about parent experiences of this process. This study was intended to explore parents' understanding of newborn screening and their experience of the consent process using a structured survey.METHODS:A mail survey exploring key components of consent was sent to parents whose children had been screened in the year before the study. A descriptive analysis of responses together with logistic regression was performed to identify variables that predicted parental likelihood to agree that they had made an informed choice to screening.RESULTS:Most parents indicated they understood why the heel prick was done, but only a third understood how conditions would be dealt with if found. Almost a third of parents reported that they did not feel they had a choice to decline screening, yet >70% felt they had made an informed choice. Logistic regression indicated previous children, understanding why the heel prick was done, having time to make a decision, and feeling they had a choice were significant predictors of feeling an informed choice had been made.CONCLUSIONS:The findings support previous studies that screening may be seen as a fait accompli. Analyses indicated that allowing time to make a decision (eg, by providing information during pregnancy, emphasizing the decision-making aspect, and clearly articulating the reasons behind screening) may help parents feel that they have made an informed choice.

1 Bookmark
  • [Show abstract] [Hide abstract]
    ABSTRACT: In the United States, data from federally funded genomics studies are stored in national databases, which may be accessible to anyone online (public release) or only to qualified researchers (restricted release). The availability of such data exposes participants to privacy risk and limits the ability to withdraw from research. This exposure is especially challenging for pediatric participants, who are enrolled in studies with parental permission. The current study examines genomic research participants' attitudes to explore differences in data sharing (DS) preferences between parents of pediatric patients and adult patients. A total of 113 parents of pediatric patients and 196 adult participants from 6 genomics studies were randomly assigned to 3 experimental consent forms. Participants were invited to a follow-up structured interview exploring DS preferences, study understanding, and attitudes. Descriptive analyses and regression models were built on responses. Most parents (73.5%) and adult participants (90.3%) ultimately consented to broad public release. However, parents were significantly more restrictive in their data release decisions, not because of understanding or perceived benefits of participation but rather autonomy and control. Parents want to be more involved in the decision about DS and are significantly more concerned than adult participants about unknown future risks. Parents have the same altruistic motivations and grasp of genomics studies as adult participants. However, they are more concerned about future risks to their child, which probably motivates them to choose more restrictive DS options, but only when such options are made available.
    PEDIATRICS 03/2014; · 5.30 Impact Factor
  • [Show abstract] [Hide abstract]
    ABSTRACT: Over the last few years, there has been growing international concern about the risk of overdiagnosis in breast screening and about how to communicate this to women. There has also been an increasing policy drive to provide people with information to enable them to make an informed choice about screening. In response to this, a novel approach to developing the information about cancer screening has been adopted in England. This approach has integrated the perspectives of people eligible for screening, and experts in public engagement, informed choice, and communicating risk, as well as experts in screening. New information based on this approach has been provided to women invited for breast screening from September 2013. The new information explicitly sets out the choice to be made, and provides much more detail than previous information about overdiagnosis, the balance of benefits and harms, and the scientific uncertainties. The novel approach has also been adopted to develop new information for the bowel and cervical screening programmes in England, and could provide a model for communicating about cancer screening in other countries.
    Journal of Medical Screening 10/2014; · 2.72 Impact Factor


Available from
May 30, 2014