Literature DB >> 22186830

Proceduralisation, choice and parental reflections on decisions to accept newborn bloodspot screening.

Stuart G Nicholls1.   

Abstract

Newborn screening is the programme through which newborn babies are screened for a variety of conditions shortly after birth. Programmes such as this are individually oriented but resemble traditional public health programmes because they are targeted at large groups of the population and they are offered as preventive interventions to a population considered healthy. As such, an ethical tension exists between the goals of promoting the high uptake of supposedly 'effective' population-oriented programmes and the goal of promoting genuinely informed decision-making. There is, however, a lack of understanding with regard to how parents experience the tension between promoting uptake and facilitating informed choice. This paper addresses this issue, and data are presented to show how aspects of the timing, presentation of information and procedural routinisation of newborn screening serves to impact on the decisions made by parents.

Mesh:

Year:  2011        PMID: 22186830     DOI: 10.1136/medethics-2011-100040

Source DB:  PubMed          Journal:  J Med Ethics        ISSN: 0306-6800            Impact factor:   2.903


  7 in total

1.  Considering consent: a structural equation modelling analysis of factors influencing decisional quality when accepting newborn screening.

Authors:  Stuart G Nicholls; Kevin W Southern
Journal:  J Inherit Metab Dis       Date:  2013-09-17       Impact factor: 4.982

2.  Education and parental involvement in decision-making about newborn screening: understanding goals to clarify content.

Authors:  Beth K Potter; Holly Etchegary; Stuart G Nicholls; Brenda J Wilson; Samantha M Craigie; Makda H Araia
Journal:  J Genet Couns       Date:  2014-11-18       Impact factor: 2.537

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

Authors:  Holly Etchegary; Stuart G Nicholls; Laure Tessier; Charlene Simmonds; Beth K Potter; Jamie C Brehaut; Daryl Pullman; Robyn Hayeems; Sari Zelenietz; Monica Lamoureux; Jennifer Milburn; Lesley Turner; Pranesh Chakraborty; Brenda Wilson
Journal:  Eur J Hum Genet       Date:  2016-06-15       Impact factor: 4.246

4.  Framing optional genetic testing in the context of mandatory newborn screening tests.

Authors:  Sarah E Lillie; Beth A Tarini; Nancy K Janz; Brian J Zikmund-Fisher
Journal:  BMC Med Inform Decis Mak       Date:  2015-06-27       Impact factor: 2.796

5.  Stakeholder attitudes towards the role and application of informed consent for newborn bloodspot screening: a study protocol.

Authors:  S G Nicholls; L Tessier; H Etchegary; J C Brehaut; B K Potter; R Z Hayeems; P Chakraborty; J Marcadier; J Milburn; D Pullman; L Turner; B J Wilson
Journal:  BMJ Open       Date:  2014-11-24       Impact factor: 2.692

Review 6.  Absorbing it all: A meta-ethnography of parents' unfolding experiences of newborn screening.

Authors:  Ashley L White; Felicity Boardman; Abigail McNiven; Louise Locock; Lisa Hinton
Journal:  Soc Sci Med       Date:  2021-09-03       Impact factor: 4.634

Review 7.  Receiving results of uncertain clinical relevance from population genetic screening: systematic review & meta-synthesis of qualitative research.

Authors:  Faye Johnson; Fiona Ulph; Rhona MacLeod; Kevin W Southern
Journal:  Eur J Hum Genet       Date:  2022-03-08       Impact factor: 5.351

  7 in total

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