Public accountability of newborn screening: Collective knowing and deciding

Wieser, Bernhard

doi:10.1016/j.socscimed.2009.12.001

Cited by 12 publications

(10 citation statements)

References 15 publications

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“…Many of these debates are very heated, with frequent claims and counter-claims made to support particular positions and interests. It almost goes without saying that the kinds of evidence that particular groups draw upon and cite in support of their positions and demands can vary enormously, with a common juxtaposition being discernible between personal experience or understanding of a disease on the one hand and epidemiological study and technical principles on the other (see for example, Barker and Galardi 2011, Armstrong and Murphy 2008, Armstrong et al Page 16 of 26 2010, Wieser 2010, Lehoux et al 2010. Developing a rigorous and focused sociology of screening will help to invigorate and inform these debates, in particular by affording deeper recognition of the social and ethical implications of screening, and contribute to the evidence-base on which policy and practice is founded.…”

Section: Resultsmentioning

confidence: 99%

The Sociology of Medical Screening: Past, Present and Future

Armstrong

Eborall

2012

The Sociology of Medical Screening

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Section: Resultsmentioning

confidence: 99%

The Sociology of Medical Screening: Past, Present and Future

Armstrong

Eborall

2012

The Sociology of Medical Screening

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“…Previous studies have dealt with screening algorithms and technical description of the programmes [4,16,28,29]. Further research presents case studies of selected countries or disorders [30,31,32,33]. Other studies focus on the definition of appraisal criteria from which our approach departed [5,34,35].…”

Section: Discussionmentioning

confidence: 99%

Funding Decisions for Newborn Screening: A Comparative Review of 22 Decision Processes in Europe

Fischer

Rogowski

2014

IJERPH

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Decision-makers need to make choices to improve public health. Population-based newborn screening (NBS) is considered as one strategy to prevent adverse health outcomes and address rare disease patients’ needs. The aim of this study was to describe key characteristics of decisions for funding new NBS programmes in Europe. We analysed past decisions using a conceptual framework. It incorporates indicators that capture the steps of decision processes by health care payers. Based on an internet survey, we compared 22 decisions for which answers among two respondents were validated for each observation. The frequencies of indicators were calculated to elicit key characteristics. All decisions resulted in positive, mostly unrestricted funding. Stakeholder participation was diverse focusing on information provision or voting. Often, decisions were not fully transparent. Assessment of NBS technologies concentrated on expert opinion, literature review and rough cost estimates. Most important appraisal criteria were effectiveness (i.e., health gain from testing for the children being screened), disease severity and availability of treatments. Some common and diverging key characteristics were identified. Although no evidence of explicit healthcare rationing was found, processes may be improved in respect of transparency and scientific rigour of assessment.

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“…This is the first addition of conditions in the UK since 2007, and almost doubles the number of conditions screened. This demonstrates that the UK has a more conservative approach to assessing conditions than many other countries ( 34 ).…”

Section: International Experiencesmentioning

confidence: 97%

Review of Current International Decision-Making Processes for Newborn Screening: Lessons for Australia

Metternick-Jones

Lister

Dawkins

et al. 2015

Front. Public Health

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Newborn bloodspot screening has been operating successfully in Australia for almost 50 years. Recently, the development of new technologies and treatments has led to calls for the addition of new conditions to the screening programs. Internationally, it is recognized by governments that national policies for newborn screening should support transparent and evidence-based decision making, and promote consistency between states within a country. Australia is lagging behind the international community, and currently has no national policies or decision-making processes, agreed by government, to support its newborn screening programs. In contrast, New Zealand (NZ), the United Kingdom (UK), and the United States of America (US) have robust and transparent processes to assess conditions for screening, which have been developed by, and have pathways to, government. This review provides detail on the current policy environment for newborn screening in Australia, highlighting that there are a number of risks to the programs resulting from the lack of a decision-making process. It also describes the processes used to assess conditions for newborn screening in the US, UK, and NZ. These examples highlight the benefits of developing a national decision-making process, including ensuring that screening is evidence based and effective. These examples also provide models that might be considered for Australia, as well as other countries currently seeking to introduce or expand newborn bloodspot screening.

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Public accountability of newborn screening: Collective knowing and deciding

Cited by 12 publications

References 15 publications

The Sociology of Medical Screening: Past, Present and Future

The Sociology of Medical Screening: Past, Present and Future

Funding Decisions for Newborn Screening: A Comparative Review of 22 Decision Processes in Europe

Review of Current International Decision-Making Processes for Newborn Screening: Lessons for Australia

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