Mothers' Views on Longer Storage of Neonatal Dried Blood Spots for Specific Secondary Uses

Teeffelen, S.R. van; Douglas, Conor M.W.; El, Carla G. van; Weinreich, S.; Henneman, Lidewij; Radstake, Maud; Cornel, Martina C.

doi:10.1159/000441516

Cited by 6 publications

(7 citation statements)

References 24 publications

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“…From both the opinion survey and the focus groups, we observed that many parents were not aware of the potential value of rDBS before taking part in the study. A low awareness of the retention of rDBS and its potential value in population health have been similarly reported in previous studies [ 28 , 29 ]. A discussion on the topic has been shown to help parents feel positive about retention and secondary use of rDBS [ 14 ].…”

Section: Discussionsupporting

confidence: 65%

The view of Hong Kong parents on secondary use of dried blood spots in newborn screening program

et al. 2022

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Background Residual dried blood spots (rDBS) from newborn screening programmes represent a valuable resource for medical research, from basic sciences, through clinical to public health. In Hong Kong, there is no legislation for biobanking. Parents’ view on the retention and use of residual newborn blood samples could be cultural-specific and is important to consider for biobanking of rDBS. Objective To study the views and concerns on long-term storage and secondary use of rDBS from newborn screening programmes among Hong Kong Chinese parents. Methods A mixed-method approach was used to study the views and concerns on long-term storage and secondary use of rDBS from newborn screening programmes among Hong Kong Chinese parents of children 0–3 years or expecting parents through focus groups (8 groups; 33 participants) and a survey (n = 1012, 85% mothers) designed with insights obtained from the focus groups. We used framework analysis to summarise the themes as supportive factors, concerns and critical arguments for retention and secondary use of rDBS from focus group discussion. We used multiple logistic regression to assess factors associated with support for retention and secondary use of rDBS in the survey. Results Both in focus groups and survey, majority of parents were not aware of the potential secondary use of rDBS. Overall secondary use of rDBS in medical research was well accepted by a large proportion of Hong Kong parents, even if all potential future research could not be specified in a broad consent. However parents were concerned about potential risks of biobanking rDBS including leaking of data and mis-use of genetic information. Parents wanted to be asked for permission before rDBS are stored and mainly did not accept an “opt-out” approach. The survey showed that parents born in mainland China, compared to Hong Kong born parents, had lower awareness of newborn screening but higher support in biobanking rDBS. Higher education was associated with support in rDBS biobanking only among fathers. Conclusion Long-term storage and secondary use of rDBS from newborn screening for biomedical research and a broad consent for biobanking of rDBS are generally acceptable to Hong Kong parents given their autonomy is respected and their privacy is protected, highlighting the importance of an accountable governance and a transparent access policy for rDBS biobanks.

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Section: Discussionsupporting

confidence: 65%

The view of Hong Kong parents on secondary use of dried blood spots in newborn screening program

et al. 2022

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“…According to a study carried out in the Netherlands, Dutch mothers lean towards supporting secondary use of this data. However, more efforts are required in order to involve parents in developing policies that deal with DBSs [57]. Several researchers have used DBS data to gain more insight into different conditions and disorders.…”

Section: B Secondary Use Of Patient Data For Genomic Research and Tomentioning

confidence: 99%

Secondary Use and Analysis of Big Data Collected for Patient Care

et al. 2017

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SummaryObjectives: To identify common methodological challenges and review relevant initiatives related to the re-use of patient data collected in routine clinical care, as well as to analyze the economic benefits derived from the secondary use of this data. Through the use of several examples, this article aims to provide a glimpse into the different areas of application, namely clinical research, genomic research, study of environmental factors, and population and health services research. This paper describes some of the informatics methods and Big Data resources developed in this context, such as electronic phenotyping, clinical research networks, biorepositories, screening data banks, and wide association studies. Lastly, some of the potential limitations of these approaches are discussed, focusing on confounding factors and data quality. Methods: A series of literature searches in main bibliographic databases have been conducted in order to assess the extent to which existing patient data has been repurposed for research. This contribution from the IMIA working group on "Data mining and Big Data analytics" focuses on the literature published during the last two years, covering the timeframe since the working group's last survey. Results and Conclusions: Although most of the examples of secondary use of patient data lie in the arena of clinical and health services research, we have started to witness other important applications, particularly in the area of genomic research and the study of health effects of environmental factors. Further research is needed to characterize the economic impact of secondary use across the broad spectrum of translational research.

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“…These points bear on both the results of this study and their significance. Awareness of DBS research is ubiquitously low (Botkin et al 2014;van Teeffelen et al 2016;Davis et al 2006;Newcomb et al 2013), and criticism and controversy have arisen over real or perceived lack of transparency about routinized storage. National studies find that people want to know that they are biobank participants and prefer to have the option to choose to participate (Botkin et al 2013;Rothwell et al 2012;Tarini et al 2010b;Garrison et al 2015).…”

Section: Content Analysismentioning

confidence: 99%

“…A consistent finding from the global literature on newborn screening, biobanking, and genetic research is the need to strengthen public engagement and education efforts to improve public awareness and understanding, assess opinion and expectations, foster inclusive discussion, and to inform and ensure ethical practices and policies in these contexts (Simon et al 2011;Botkin et al 2013;Rothwell et al 2010;Botkin et al 2014;Davey et al 2005;Etchegary et al 2013;Goldenberg 2009;Bombard et al 2012;Cañada et al 2015;van Teeffelen et al 2016;Davis et al 2006). The literature has called for improved, parent-centered educational materials (Botkin et al 2013); improved timing of education to allow parents to process information in the prenatal period, rather than within 72 h of childbirth (Botkin et al 2013;Rothwell et al 2010;Davey et al 2005;Davis et al 2006); public engagement to help guide policy and diverse community engagement methods to account for diverse contexts and communities (Etchegary et al 2013); informing of participants to legitimize opt-out policies (Goldenberg 2009); and further qualitative research to better understand parent and public attitudes about DBS storage and genetic research (Bombard et al 2012;van Teeffelen et al 2016;Rothwell et al 2012).…”

Section: Introductionmentioning

confidence: 96%

Engaging a state: Facebook comments on a large population biobank

Platt

Thiel

et al. 2017

J Community Genet

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Scholarship on newborn screening, dried bloodspot retention, and large population biobanking call consistently for improved public engagement. Communication with participants likely occurs only in the context of collection, consent, or notification, if at all. We ran an 11-week advertising campaign to inform Michigan Facebook users unlikely to know that their or their children's dried bloodspots (DBSs) were stored in a state biobank. We investigated the pattern and content of comments posted during the campaign, focusing on users' questions, attitudes and concerns, and the role the moderator played in addressing them. We used Facebook data to quantitatively assess engagement and employed conventional content analysis to investigate themes, attitudes, and social dynamics among user and moderator comments. Five ad sets elicited comments during campaign weeks 4-8, reaching ∼800,000 Facebook users ($6000). Gravitating around broad, underlying ethical, legal, and social issues, 180 posts from 129 unique users related to newborn screening or biobanking. Thirty six conveyed negative attitudes and 33 conveyed positive attitudes; 53 posed questions. The most prevalent themes identified were consent, privacy, bloodspot use, identifiability, inclusion criteria, research benefits, (mis)trust, genetics, DBS destruction, awareness, and the role of government. The moderator's 81 posts were responsive-answering questions, correcting or clarifying information, or providing information about opting out. Facebook ad campaigns can improve engagement by pushing out relevant content and creating dynamic, responsive, visible forums for discussion. Reduced control over messaging may be worth the trade-off for creating accessible, transparent, people-centered engagement on public health issues that are sensitive and complex.

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Mothers' Views on Longer Storage of Neonatal Dried Blood Spots for Specific Secondary Uses

Cited by 6 publications

References 24 publications

The view of Hong Kong parents on secondary use of dried blood spots in newborn screening program

The view of Hong Kong parents on secondary use of dried blood spots in newborn screening program

Secondary Use and Analysis of Big Data Collected for Patient Care

Engaging a state: Facebook comments on a large population biobank

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