Parental views on informed consent for expanded newborn screening

Moody, Louise; Choudhry, Kubra

doi:10.1111/j.1369-7625.2011.00710.x

Cited by 26 publications

(82 citation statements)

References 29 publications

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“…Providing key information well before delivery could help alleviate later distress by preparing parents for the possibility of positive screening results, and reinforcing the difference between screening and diagnosis. Thus, although there is still room for discussion about the specific content of parental education, whose responsibility it is to offer it and effective ways of providing it, 9,17,36 our findings add support to the importance of efforts to ensure parents go into the birthing process already knowing about NBS. 27 These results are not new, but they do raise interesting questions for researchers and those responsible for NBS programs.…”

Section: Discussionmentioning

confidence: 53%

“…17,29 Results are consistent with a growing literature revealing very supportive parental views of NBS. 27,29,[35][36] It is important to appreciate that the majority of parents in NBS programs are 'satisfied customers': 37 most will receive screen negative results, and in the case of acceptance of screening, their understanding is not put to the test. It highlights the importance, in research and quality assurance studies, of seeking out those participants who are most likely to provide a discordant view, however infrequent this is.…”

Section: Discussionmentioning

confidence: 99%

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Consent for newborn screening: parents’ and health-care professionals’ experiences of consent in practice

et al. 2016

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Consent processes for newborn bloodspot screening (NBS) are variable, with a lack of descriptive research that depicts how the offer of NBS is made to parents. We explored the experience, in practice, of consent for NBS. Semistructured interviews in two Canadian provinces were held with: (1) parents of children offered NBS (n = 32); and (2) health-care professionals involved in the NBS process (n = 19). Data on recollections of NBS, including consent processes, were utilized to identify emerging themes using the method of constant comparison. Three themes were relevant to NBS consent: (1) The 'offer' of NBS; (2) content and timing of information provision; and (3) the importance of parental experiences for consent decisions. Recollections of consent for NBS were similar between jurisdictions. Excepting midwives and their patients, NBS was viewed as a routine part of giving birth, with little evidence of an informed consent process. Although most parents were satisfied, all respondents suggested information about NBS be provided long before the birth. Accounts of parents who declined screening highlight the influence of parental experiences with the heel prick process in screening decisions. Findings further our understanding of consent in practice and highlight areas for improvement in parent-provider interactions.

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Section: Discussionmentioning

confidence: 53%

Section: Discussionmentioning

confidence: 99%

Consent for newborn screening: parents’ and health-care professionals’ experiences of consent in practice

et al. 2016

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“…being included in the review, 8,12,14,15,17,19,20,25,26,[28][29][30]33, covering NBS in a number of different countries: England (n = 11 8,14,25,62,66,70,72,[78][79][80]83 ), Wales (n = 2 85,86 ), France (n = 1 89 ), Germany (n = 1 15 ), the Netherlands (n = 1 29 ), USA (n = 20 17,19,26,30,33,61,63,64,71,[74][75][76]81,82,84,87,88,90,91,93 ), Canada (n = 4 12,65,…”

Section: Theories Of Informed Consent: Developing An Analytical Framementioning

confidence: 99%

Provision of information about newborn screening antenatally: a sequential exploratory mixed-methods project

Ulph

Wright

Dharni

et al. 2017

Health Technol Assess

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BackgroundParticipation in the UK Newborn Bloodspot Screening Programme (NBSP) requires parental consent but concerns exist about whether or not this happens in practice and the best methods and timing to obtain consent at reasonable cost.ObjectivesTo collate all possible modes of prescreening communication and consent for newborn (neonatal) screening (NBS); examine midwives’, screening professionals’ and users’ views about the feasibility, efficiency and impact on understanding of each; measure midwives’ and parents’ preferences for information provision; and identify key drivers of cost-effectiveness for alternative modes of information provision.DesignSix study designs were used: (1) realist review – to generate alternative communication and consent models; (2) qualitative interviews with parents and health professionals – to examine the implications of current practice for understanding and views on alternative models; (3) survey and observation of midwives – to establish current costs; (4) stated preference surveys with midwives, parents and potential future parents – to establish preferences for information provision; (5) economic analysis – to identify cost-effectiveness drivers of alternative models; and (6) stakeholder validation focus groups and interviews – to examine the acceptability, views and broader impact of alternative communication and consent models.SettingProviders and users of NBS in England.ParticipantsStudy 2: 45 parents and 37 health professionals; study 3: 22 midwives and eight observations; study 4: 705 adults aged 18–45 years and 134 midwives; and study 6: 12 health-care professionals and five parents.ResultsThe realist review identified low parental knowledge and evidence of coercive consent practices. Interview, focus group and stated preference data suggested a preference for full information, with some valuing this more than choice. Health professionals preferred informed choice models but parents and health professionals queried whether or not current consent was fully informed. Barriers to using leaflets effectively were highlighted. All studies indicated that a ‘personalised’ approach to NBS communication, allowing parents to select the mode and level of information suited to their learning needs, could have added value. A personalised approach should rely on midwife communication and should occur in the third trimester. Overall awareness was identified as requiring improvement. Starting NBS communication by alerting parents that they have a choice to make and telling them that samples could be stored are both likely to enhance engagement. The methods of information provision and maternal anxiety causing additional visits to health-care professionals were the drivers of relative cost-effectiveness. Lack of data to populate an economic analysis, confirmed by value of information analysis, indicated a need for further research.LimitationsThere are some limitations with regard to the range of participants used in studies 2 and 3 and so caution should be exercised when interpreting some of the results.ConclusionsThis project highlighted the importance of focusing on information receipt and identified key communication barriers. Health professionals strongly preferred informed consent, which parents endorsed if they were made aware of sample storage. Uniform models of information provision were perceived as ineffective. A choice of information provision was supported by health professionals and parents, which both enhances cost-effectiveness and improves engagement, understanding and the validity of consent. Remaining uncertainties suggest that more research is needed before new communication modes are introduced into practice. Future research should measure the impact of the suggested practice changes (informing in third trimester, information toolkits, changed role of midwife).Trial registrationCurrent Controlled Trials ISRCTN70227207.FundingThis project was funded by the NIHR Health Technology Assessment programme and will be published in full inHealth Technology Assessment; Vol. 21, No. 55. See the NIHR Journals Library website for further project information.

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“…1 Most parents accept the trade-off between the need for rapid action and the loss of parental autonomy, 2 although cross-country variations exist. [3][4][5] Some ethicists suggest that the possibility of whole-genome or whole-exome sequencing and the breadth of information potentially available will only heighten the debate, forcing mandatory screening to be reconsidered and strengthening the case for informed consent. 6,7 Newborn screening pilot programs can be conducted by states without parental consent if the study meets institutional review board (IRB) criteria for minimal risk, protection of rights and welfare, and impracticability.…”

Section: The Newborn Screening Contextmentioning

confidence: 99%

Can a decision aid enable informed decisions in neonatal nursery recruitment for a fragile X newborn screening study?

Bailey

Bann

Bishop

et al. 2013

Genetics in Medicine

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Parental views on informed consent for expanded newborn screening

Cited by 26 publications

References 29 publications

Consent for newborn screening: parents’ and health-care professionals’ experiences of consent in practice

Consent for newborn screening: parents’ and health-care professionals’ experiences of consent in practice

Provision of information about newborn screening antenatally: a sequential exploratory mixed-methods project

Can a decision aid enable informed decisions in neonatal nursery recruitment for a fragile X newborn screening study?

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