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.

Ethical and Regulatory Issues with Residual Newborn Screening Dried Bloodspots

“…It may be more beneficial to focus on educational efforts about newborn screening and residual DBS during prenatal care as well as newborn care. This is also consistent with the research evidence reports that many parents want to receive education about newborn screening during prenatal care and that repetition of information can enhance learning [26].…”

“…In one study, we conducted a 4-part project that involved: a comprehensive analysis of NBS state laws [22]; focus groups with NBS advisory committee members and interviews with NBS program employees [21]; national survey of public attitudes (n = 3855) [25] [26]; and ending with a working group of NBS experts to develop policy recommendations [27]. (NIH; R01 HG004970-01) Outcomes of this research provide substantial evidence that parents are supportive of research with DBS but want to be given a choice.…”

Public concerns regarding the storage and secondary uses of residual newborn bloodspots: an analysis of print media, legal cases, and public engagement activities

“…Many public health officials, researchers, ethicists, and policymakers around the world have expressed concern regarding the ethical, legal, and social implications of using RBS specimens for research unrelated to the NBS process (e.g., Norgaard-Pedersen and Hougaard 2007; Rothwell et al 2010Rothwell et al , 2011; United Kingdom Newborn Screening Programme Centre 2005; University of Michigan Health System 2011). Importantly, some parents of children whose RBS are being stored, and in some cases used for purposes beyond the initial screening, have also expressed strong concerns (e.g., Carmichael 2011;Armstrong 2010;Cohen 2010;Botkin et al 2012;Rothwell et al 2012;Tarini et al 2009). This section will summarize public concerns identified in (1) print media, (2) lawsuits, and (3) public engagement activities.…”

Attitudes of Parents of Children with Serious Health Conditions regarding Residual Bloodspot Use

“…An important element in policy development is the assessment of attitudes among relevant stakeholders. The attitudes of the public have been assessed regarding this issue in several studies, with findings suggesting that the public is generally supportive of NBS and the storage and use of residual bloodspots for research [9,10,11,12]. These studies also suggest that the general public holds concerns regarding privacy of families and the consent process surrounding the storage of these samples for use in research.…”

“…A number of studies have been conducted to assess the attitude of the general public regarding the use of residual bloodspots for research [9,10,11,12], but no study to date has been conducted to assess the attitudes of parents who have a child with a serious health condition. It is, however, important to assess the attitudes of these parents, as they are one of the important stakeholders of NBS and use of residual bloodspots for research.…”