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Assessing public attitudes on the retention and use of residual newborn screening blood samples: a focus group study.

ABSTRACT: This paper discusses attitudes and opinions of a diverse group of participants toward the retention and use of residual newborn blood samples for research. Data were drawn from focus groups based in six states in the USA, and results provide support for the retention and use of residual newborn blood samples for research when parental permission is asked beforehand. However, there were a number of concerns that also warrant attention for the development of policy and maintaining trust with the public, such as timing of permission, use of samples already stored, level of personal control of sample use and education. The results demonstrate the complexity of the topic and the ethical ambiguities associated with the retention and use of residual newborn blood samples.

SUBMITTER: Rothwell E

PROVIDER: S-EPMC3343738 | biostudies-literature | 2012 Apr

REPOSITORIES: biostudies-literature

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Assessing public attitudes on the retention and use of residual newborn screening blood samples: a focus group study.

Rothwell Erin E Anderson Rebecca R Goldenberg Aaron A Lewis Michelle H MH Stark Louisa L Burbank Matthew M Wong Bob B Botkin Jeffrey R JR

Social science & medicine (1982) 20120218 8

This paper discusses attitudes and opinions of a diverse group of participants toward the retention and use of residual newborn blood samples for research. Data were drawn from focus groups based in six states in the USA, and results provide support for the retention and use of residual newborn blood samples for research when parental permission is asked beforehand. However, there were a number of concerns that also warrant attention for the development of policy and maintaining trust with the p ...[more]

PMID: 22398141

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Project description:IntroductionHearing loss is the most common congenital condition screened for at birth in the United States, and more than 95% of newborns are currently screened for hearing. Newborn hearing screening is most effective when infants receive timely and effective interventions. Unfortunately, follow-up rates for newborns not passing their initial hearing screenings are as low as 50% in some states. Midwives are well-positioned to encourage families to follow-up with their neonatal providers when newborns are referred for further testing. Newborn hearing screening is a relatively new practice in the United States and, to date, there has been no research regarding the informational needs and practices of certified nurse-midwives or certified midwives related to hearing screening. This study examined the knowledge, attitudes, and follow-up practices of midwives related to newborn hearing screening and intervention.MethodsA survey instrument was developed and sent to 5255 American College of Nurse-Midwives members in 50 states and 2 territories.ResultsFive hundred and eighteen surveys were returned, yielding a response rate of 9.9%. Only 68% of respondents said it was very important to screen all newborns for hearing loss. Respondents reported significant gaps in their knowledge about screening procedures, steps for referral, and the availability of resources when newborns did not pass the test. Midwives also reported the need for information about hearing loss conditions and genetics, screening guidelines, protocols for follow-up, referral networks, and therapies available.DiscussionCurrent practices in newborn hearing screening and intervention programs can be enhanced by strengthening the basic midwifery knowledge of and rationale for follow-up when newborns fail their hearing screenings. Midwives can play an integral role in optimizing hearing, speech, and family interaction by assuring that each newborn has access to the best hearing screening and referrals.

Project description:Introduction: With increasing utility and decreasing cost of genomic sequencing, augmentation of standard newborn screening (NBS) programs with newborn genomic sequencing (nGS) has been proposed. Before nGS can be integrated into newborn screening, parents' perspectives must be better understood. Objective: Using data from surveys administered to parents of healthy newborns who were enrolled in the BabySeq Project, a randomized clinical trial of nGS alongside NBS, this paper reports parents' attitudes regarding population-based NBS and nGS assessed 3 months after results disclosure. Methods: Parental attitudes regarding whether all newborns should receive, and whether informed consent should be required for, NBS and nGS, as well as whether nGS should be mandated were assessed using 5-point scales from strongly disagree (=1) to strongly agree (=5). Parents' interest in receiving types of results from nGS was assessed on a 5-point scale from not at all interested (=1) to very interested (=5). Survey responses were analyzed using Fisher's exact tests, paired t-tests, and repeated measures ANOVA. Results: At 3 months post-disclosure, 248 parents of 174 healthy newborns submitted a survey. Support for every newborn receiving standard NBS (mean 4.67) was higher than that for every newborn receiving nGS (mean 3.60; p < 0.001). Support for required informed consent for NBS (mean 3.44) was lower than that for nGS (mean 4.27, p < 0.001). Parents' attitudes toward NBS and nGS were not significantly associated with self-reported political orientation. If hypothetically receiving nGS outside of the BabySeq Project, most parents reported being very interested in receiving information on their baby's risk of developing a disease in childhood that can be prevented, treated, or cured (86.8%) and their risk of developing a disease during adulthood that can be prevented, treated, or cured (84.6%). Discussion: Parents' opinions are crucial to inform design and delivery of public health programs, as the success of the program hinges on parents' trust and participation. To accommodate parents' preferences without affecting the current high participation rates in NBS, an optional add-on consent to nGS in addition to NBS may be a feasible approach. Trial Registration ClinicalTrials.gov Identifier: NCT02422511.

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Assessing public attitudes on the retention and use of residual newborn screening blood samples: a focus group study.

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Assessing public attitudes on the retention and use of residual newborn screening blood samples: a focus group study.

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