Public Support for the Use of Newborn Screening Dried Blood Spots in Health Research

Abstract

Objectives: The level of support among Michigan adults for the use of residual newborn screening dried blood spots (DBS) was investigated. Methods: We analyzed data from 4 questions on the 2008 Michigan Behavioral Risk Factor Surveillance System (n = 3,108). The questions asked about general support for the use of DBS for research and for research investigating childhood diseases, adult diseases and diseases related to environmental exposures. Results: The majority of adults (72.3%) favored the use of DBS for research intended to benefit the health of residents. With more question specificity, a higher proportion of adults (84.2%–86.8%) were found to favor the use of DBS for research, and a lower proportion had no opinion. The odds of favoring use were higher among those who were younger, female, white, healthy, or with at least a high school degree. Conclusions: This is the first population survey of adult attitudes regarding use of DBS for different types of health research, with results showing considerable public support. The findings are being used in community outreach efforts and highlight the need to investigate opposition in vulnerable populations.

Michigan BioTrust for Health: Public Support for Using Residual Dried Blood Spot Samples for Health Research

“…We found that the participants were generally positive about the BioTrust and that this sentiment held true across the different demographic populations. The high level of support for specific types of research was consistent with the results of a larger population-based survey conducted as part of the Michigan Behavioral Risk Factor Survey in 2008 [12]. The level of support among the focus groups was also consistent with a national study by Tarini et al [13] which showed that approximately 76% of parents were willing to permit use of their children’s residual newborn screening DBS samples for research if permission is obtained, and 78% would allow storage of the sample.…”

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

“…Japan (National) (Fujii et al 2010) 8. Michigan, USA (Duquette et al 2010) 9. Canada (National) (Richer et al 2011) 10.…”

Newborn screening programmes: Emerging biobanks?

“…Typically parents are not aware that the NBS are being stored [60,61] and the possibility of requesting to use dried blood spots for research was not mentioned in the educational materials provided to the parents. In the past, the storage and use of newborn blood spots for research received minimal public attention [62]. For families, storage of newborn blood spots and the general lack of information about the exact future purposes of stored samples raise concerns about confidentiality, privacy, and the possible misuses of these samples resulting in psychological harm and discrimination.…”

“…A review of various policies and laws reveals that there is no general consensus regarding the storage and use of residual NBS for research [1,62,64]. Some jurisdictions such as Sweden have included NBS storage requirements within their laws on biobanking [65].…”