Stuart Nicholls | Children's Hospital of Eastern Ontario (original) (raw)

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Books by Stuart Nicholls

Chapter list: -- Empirical uncertainty : some difficulties in placing obesity centerstage --... more Chapter list:

-- Empirical uncertainty : some difficulties in placing obesity centerstage
-- Normative uncertainty : what do we want from policies to address childhood obesity
-- Childhood obesity and parental responsibility
-- Childhood obesity interventions, equity and social justice
-- Stigma and weight bias : implications for childhood obesity interventions
-- Childhood obesity and the "obesogenic environment"
-- Price policies as strategies for obesity prevention
-- Responding to food marketing targeted at children : regulation, social marketing and media literacy
-- Schools and childhood obesity
-- Childhood obesity : some practical implications.

Papers by Stuart Nicholls

Introduction: Empirical studies of attitudes toward consent practices for newborn screening indic... more Introduction: Empirical studies of attitudes toward consent practices for newborn screening indicate varied perspectives, depending on jurisdiction. An assumption within the literature is that terminology such as ‘informed consent’ is consistently interpreted by all stakeholders, and that as a result the differences in expressed opinions are a result of different attitudes toward consent. Recent studies call into question this assumption, and indicate that at least in some cases attitudes may be dependent on individual meaning, which may differ between respondents. This study examines understandings of consent terminology within two divergent newborn bloodspot screening programs in Canada. Methods and Analysis: Semi-structured interviews were conducted with parents whose children had been offered screening (n=28), healthcare professionals (n=19), and policy decision-makers (n=17). The study was undertaken in parallel at within Ontario and Newfoundland & Labrador. These sites vary in...

Journal of Genetic Counseling, 2014

A challenge in designing effective education for parents about newborn screening (NBS) has been u... more A challenge in designing effective education for parents about newborn screening (NBS) has been uncertainty about appropriate content. Arguing that the goals of education may be usefully tied to parental decision-making, we sought to: (1) explore how different ways of implementing NBS differ in their approaches to parental engagement in decision-making; (2) map the potential goals of education onto these &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;quot;implementation models&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;quot;; and (3) consider the content that may be needed to support these goals. The resulting conceptual framework supports the availability of comprehensive information about NBS for parents, irrespective of the model of implementation. This is largely because we argue that meeting parental expectations and preferences for communication is an important goal regardless of whether or notparents are actively involved in making a decision. Our analysis supports a flexible approach, in which some educational messages are emphasized as important for all parents to understand while others are made available depending on parents&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39; preferences. We have begun to define the content of NBS education for parents needed to support specific goals. Further research and discussion is important to determine the most appropriate strategies for delivering the tailored approach to education that emerged from our analysis.

Improving the transparency and quality of reporting in biomedical research is considered ethicall... more Improving the transparency and quality of reporting in biomedical research is considered ethically important; yet, this is often based on practical reasons such as the facilitation of peer review. Surprisingly, there has been little explicit discussion regarding the ethical obligations that underpin reporting guidelines. In this commentary, we suggest a number of ethical drivers for the improved reporting of research. These ethical drivers relate to researcher integrity as well as to the benefits derived from improved reporting such as the fair use of resources, minimizing risk of harms, and maximizing benefits. Despite their undoubted benefit to reporting completeness, questions remain regarding the extent to which reporting guidelines can influence processes beyond publication, including researcher integrity or the uptake of scientific research findings into policy or practice. Thus, we consider investigation on the effects of reporting guidelines an important step in providing evidence of their benefits.

Objective Reporting of consent rates in published articles is important in order to determine po... more Objective

Reporting of consent rates in published articles is important in order to determine potential sources of bias, and validity and generalizability of results. Our objective was to determine the percentage of critical care studies for which the consent rate was reported.
Study Design and Setting

We reviewed all articles published in eight medical journals in 2013. Studies meeting the following inclusion criteria were selected: 1) randomized controlled trial (RCT) or observational clinical study, 2) study population involving critically ill patients, and 3) part of the study occurring in an intensive care unit.
Results

1871 articles were screened of which 156 were included. The consent rate was discernable in 30.8 % of articles (48/156, 95% CI: 24.1, 38.4) with a median consent rate of 86.9% (IQR 71.6, 94.1). A statement on Research Ethics Board (REB) approval was included in 96.8% of studies. There was a significant difference in reporting of consent rates between RCTs and non RCTs (58.70% versus 19.09%, P < 0.0001).
Conclusion

Consent rates are reported in less than one third of critical care studies. We encourage journals to require reporting of consent rates in order to improve interpretation, validity and generalizability of critical care study results.

Perspectives in Public Health

Background: The continued development of genomics and personalized medicine could have great bene... more Background: The continued development of genomics and personalized medicine could have great benefits for public health, but these benefits cannot be realized if there is a lack of understanding of the meaning of genomic test results and how they can be appropriately applied to any individual patient for measurable health improvements. Higher levels of health literacy have been associated with use of preventive health services and engagement in health decision-making. The public's health and genomic literacy becomes of particular importance with direct-to-consumer genomic testing, as those tested outside of a clinical setting may not have access to a health care professional (HCP) to provide full interpretation of results and advice about risk management. Aims: To identify perceived needs and expectations of the public for education about genomic profiling. Methods: Mixed-method public engagement workshops with citizens aged 50+ in Ottawa ON (n=46) and St John's NL (n=74). R...

Despite newborn screening being available for over 50 years in some provinces, there is a paucity... more Despite newborn screening being available for over 50 years in some provinces, there is a paucity of data about the structures and organisation of the different provincial programs in Canada. And while resources such as the National Newborn Screening & Global Resource Center (NNSGRC) and Baby’s First Test have provided State-level information for the United States, there is no equivalent resource in Canada that documents nationwide practice. Collecting information on the organisation and practice of newborn screening in Canada will allow for the creation of such a resource. Furthermore, this information will facilitate the sharing of practices on issues important for program operation, such as consent approaches and governance structures, but may also enable a more equitable approach to screening across Canada

Despite the longstanding availability of newborn bloodspot screening (NBS), very few studies have... more Despite the longstanding availability of newborn bloodspot screening (NBS), very few studies have explored what leads parents to accept or decline NBS for their child. As part of a larger study, we collected and explored this information to allow better understanding of the parents’ decision-making process and reasoning related to refusal of newborn screening, which in turn could inform program development. We also explored the reasoning behind parental decline of NBS as reported by healthcare professionals (HCPs).

A prospective cross-sectional electronic survey distributed via e-mail to all clinical managers o... more A prospective cross-sectional electronic survey distributed via e-mail to all clinical managers or their nominees in neonatal and maternal newborn units included in the Better Outcomes Registry and Network (BORN) Ontario, Canada (n=91).

Medical Law Review, 2010

In making his case, he begins with why the body matters before considering the body and whether i... more In making his case, he begins with why the body matters before considering the body and whether it can be viewed as a property, commodity, or a gift (Chapter 2). Chapter 3 considers the embodied self in the context of blood and organ donations and this is extended further in Chapter 4, ...

Life Sciences, Society and Policy, 2011

Informatics in primary care, 2012

Genome, 2013

Including low penetrance genomic variants in population-based screening might enable personalizat... more Including low penetrance genomic variants in population-based screening might enable personalization of screening intensity and follow up. The application of genomics in this way requires formal evaluation. Even if clinically beneficial, uptake would still depend on the attitudes of target populations. We developed a deliberative workshop on two hypothetical applications (in colorectal cancer and newborn screening) in which we applied stepped, neutrally-framed, information sets. Data were collected using nonparticipant observation, free-text comments by individual participants, and a structured survey. Qualitative data were transcribed and analyzed using thematic content analysis. Eight workshops were conducted with 170 individuals (120 colorectal cancer screening and 50 newborn screening for type 1 diabetes). The use of information sets promoted informed deliberation. In both contexts, attitudes appeared to be heavily informed by assessments of the likely validity of the test results and its personal and health care utility. Perceived benefits included the potential for early intervention, prevention, and closer monitoring while concerns related to costs, education needs regarding the probabilistic nature of risk, the potential for worry, and control of access to personal genomic information. Differences between the colorectal cancer and newborn screening groups appeared to reflect different assessments of potential personal utility, particularly regarding prevention.

Recent developments in the US, Europe and New Zealand have raised the issue of removal of conditi... more Recent developments in the US, Europe and New Zealand have raised the issue of removal of conditions from newborn screening panels. While decisions regarding the removal of health care may be predicated on questions of evidence of harm and benefit, these processes also raise important epistemological questions pertaining to the construction of evidence, and the socio-political nature of applying evidence in clinical practice. In this presentation I explore these issues and argue that the inclusion of values as part of the decision-making process will increase transparency, and facilitate discussion of best practice.

Background: To date there is no established consensus of assessment criteria for evaluating resea... more Background: To date there is no established consensus of assessment criteria for evaluating research ethics review.
Methods: We conducted a scoping review of empirical research assessing ethics review processes in order to identify common elements assessed, research foci, and research gaps to aid in the development of assessment criteria. Electronic searches of Ovid Medline, PsychInfo, and the Cochrane DSR, ACP Journal Club, DARE, CCTR, CMR, HTA, and NHSEED, were conducted. After de-duplication, 4234 titles and abstracts were reviewed. Altogether 4036 articles were excluded following screening of titles, abstracts and full text. A total of 198 articles included for final data extraction.
Results: Few studies originated from outside North America and Europe. No study reported using an underlying theory or framework of quality/effectiveness to guide study design or analyses. We did not identify any studies that had involved a controlled trial - randomised or otherwise – of ethics review procedures or processes. Studies varied substantially with respect to outcomes assessed, although tended to focus on structure and timeliness of ethics review.
Discussion: Our findings indicate a lack of consensus on appropriate assessment criteria, exemplified by the varied study outcomes identified, but also a fragmented body of research. To date research has been largely quantitative, with little attention given to stakeholder experiences, and is largely cross sectional. A lack of longitudinal research to date precludes analyses of change or assessment of quality improvement in ethics review.

Background: Translational research is the direct application of basic and applied research to pat... more Background: Translational research is the direct application of basic and applied research to patient care. It is estimated that there are at least 2,000 different skin diseases, thus there are considerable challenges in seeking to undertake research on
each of these disorders.
Objective: This eDelphi exercise was conducted in order to generate a list of translational dermatology research questions which are regarded as a priority for further investigations.
Results: During the first phase of the eDelphi, 228 research questions were generated by an expert panel which included clinical academic dermatologists, clinical dermatologists, non-clinical scientists, dermatology trainees and representatives from patient support groups. Following completion of the second and third phases, 40 questions on inflammatory skin disease, 20 questions on structural skin disorders /
genodermatoses, 37 questions on skin cancer and 8 miscellaneous questions were designated as priority translational dermatology research questions (PRQs). In addition to PRQs on a variety of disease areas (including multiple PRQs on psoriasis, eczema, squamous cell carcinoma (SCC) and melanoma), there were a number of cross-cutting
themes which identified a need to investigate mechanisms / pathogenesis of disease and the necessity to improve treatments for patients with skin disease. Conclusion: It is
predicted that this list of PRQs will help to provide a strategic direction for translational dermatology research in the UK and that addressing this list of questions will ultimately
provide clinical benefit for substantial numbers of subjects with skin disorders.

Objective: Routinely collected health data, collected for administrative and clinical purposes, w... more Objective: Routinely collected health data, collected for administrative and clinical purposes, without specific a priori research questions, are increasingly used for observational, comparative effectiveness, health services research, and clinical trials. The rapid evolution and availability of routinely collected data for research has brought to light specific issues not addressed by existing reporting guidelines. The aim of the present project was to determine the priorities of stakeholders in order to guide the development of the REporting of studies Conducted using Observational Routinely-collected health Data (RECORD) statement.
Methods: Two modified electronic Delphi surveys were sent to stakeholders. The first determined themes deemed important to include in the RECORD statement, and was analyzed using qualitative methods. The second determined quantitative prioritization of the themes based on categorization of manuscript headings. The surveys were followed by a meeting of RECORD working committee, and re-engagement with stakeholders via an online commentary period.
Results: The qualitative survey (76 responses of 123 surveys sent) generated 10 overarching themes and 13 themes derived from existing STROBE categories. Highest-rated overall items for inclusion were: Disease/exposure identification algorithms; Characteristics of the population included in databases; and Characteristics of the data. In the quantitative survey (71 responses of 135 sent), the importance assigned to each of the compiled themes varied depending on the manuscript section to which they were assigned. Following the working committee meeting, online ranking by stakeholders provided feedback and resulted in revision of the final checklist.
Conclusions: The RECORD statement incorporated the suggestions provided by a large, diverse group of stakeholders to create a reporting checklist specific to observational research using routinely collected health data. Our findings point to unique aspects of studies conducted with routinely collected health data and the perceived need for better reporting of methodological issues.

Chapter list: -- Empirical uncertainty : some difficulties in placing obesity centerstage --... more Chapter list:

Journal of Genetic Counseling, 2014

Objective Reporting of consent rates in published articles is important in order to determine po... more Objective

Perspectives in Public Health

Medical Law Review, 2010

Life Sciences, Society and Policy, 2011

Informatics in primary care, 2012

Genome, 2013

Introduction: Newborn bloodspot screening is routinely offered to all newborn babies in Canada. A... more Introduction: Newborn bloodspot screening is routinely offered to all newborn babies in Canada. As with many procedures for children, this requires proxy decision-making on the part of the parents. In addition, technical advances have led to a situation where the information generated by screening can exceed providers’ capacity to intervene therapeutically. Studies have indicated support for mandated screening in the case of treatable conditions, and a need for consent for those that are not treatable. However, these studies assume that parents have a shared understanding of terms such as informed or implied consent, but also the requirements that the different approaches create. To date, there has been little exploration of the perceived benefits or drawbacks from alternative consent approaches.

Objective: To explore the attitudes of parents towards different consent approaches for newborn bloodspot screening.

Methods: Qualitative interviews with parents in Ontario and Newfoundland & Labrador, Canada.

Results & Conclusion: We will present the results of semi-structured interviews with parents regarding consent practices for newborn bloodspot screening. Specifically, we present results of thematic analyses focussing on parent interpretations of key terms such as informed consent and implied consent, together with evaluations of necessary requirements for different approaches within the newborn screening context. In particular we report perceived differences between these approaches, and practicalities required by the differing approaches to consent.

Introduction: The quality of ethics review is often a bone of contention with trialists. Accredit... more Introduction: The quality of ethics review is often a bone of contention with trialists. Accreditation typically focuses on administrative requirements rather than assessing the quality of decisions. To date there are no established metrics of quality for research ethics review.
Aim: As a first stage we reviewed the empirical research regarding ethics review. We examined the range and nature of research activity in order to identify key themes, research foci, and research gaps to aid in the planning and commissioning of future research.
Methods: A scoping review of published studies. A study was eligible if it was empirical, considered the ethics review process, was focused on human subjects, and was published in English. Manuscript content was coded by two reviewers.
Results: 197 papers were included for data extraction. Few studies were from outside North America, Europe or Australasia. The most common research methodologies were surveys (N=93) and review of administrative data (N=79). Only two longitudinal studies and one systematic review were identified. The most common subject of study was the review process (N=148) and IRB member views (N=101). Only 7 studies included research participants and only one research sponsors. Main outcomes were: IRB structures (N=105), variation in decisions (N=62), IRB membership (N=61), delays in approvals (N=54). Least studied were participant views (N=4), IRB member knowledge (N=9), and post-approval outcomes (N=23).
Conclusion: To date studies have tended to focus on structure and timeliness of ethics review and there has been a lack of research around participant experiences, particularly in less developed countries or settings. A major limitation to date is the lack of longitudinal research which precludes any analyses of change or assessment of quality improvement in ethics review.

Background: Atrial fibrillation (AF) is a common cardiac arrhythmia, and leading cause of ischemi... more Background: Atrial fibrillation (AF) is a common cardiac arrhythmia, and leading cause of ischemic stroke. Despite being clinically indicated, warfarin is often underutilized in Atrial Fibrillation patients.

Objectives: To understand the factors that affect these prescribing decisions.

Methods: Cross-sectional survey of Canadian Family Physicians (FP: n=500), Geriatricians (G: n=149), and Internal Medicine specialists (IMS: n=500). Of these,1032 physicians were contactable, and 335 completed and usable responses were received. Physicians were asked about the frequency with which they see patients with atrial fibrillation, prescribing practices, and barriers to the prescription of anticoagulants.

Results: Stated prescribing practices did not significantly differ between physician groups. Falls risk, bleeding risk and poor patient compliance were all highly cited reasons for non-prescription. Fewer geriatricians indicated that patient falls would be a reason for non-prescription (G:47%; FP: 71%; IMS: 72%), and significantly fewer changed reported practice in the presence of falls risk (χ2(6)= 45.446, P<0.001). Experience of a patient having a stroke whilst not on warfarin had a significant impact on vignette decisions; physicians who had had patients who experienced a stroke were more likely to prescribe warfarin (χ2(3)=10.7, P=0.013).

Conclusions: Barriers to warfarin prescription differentially affect differing physician specialties. Moreover, prior experience of a patient suffering a stroke when not prescribed warfarin is positively associated with intention to prescribe warfarin prescription, even in the presence of falls risk.

Background: The potential inclusion of genomic risk profiling into population-based screening pro... more Background: The potential inclusion of genomic risk profiling into population-based screening programs may enable more targeted use of different types and intensities of screening and follow-up. However, the use of genomic profiling within screening will depend in part on public attitudes. It is, therefore, important to engage in a scientific understanding of public attitudes and respond to their concerns to ensure the effective and appropriate implementation of these applications. Objectives: To identify (i) general reactions to the idea of incorporating genomic risk profiling into routine screening activities, and (ii) responses to specific issues that may require consideration before implementing genomic risk profiling into routine screening using colorectal cancer (CRC) and newborn bloodspot screening (NBS) as examples. Methods: Eight workshops (5 CRC, 3 NBS) were conducted in Ontario and Newfoundland and Labrador, Canada. Participants were provided information regarding the possible personal, health system and societal implications of the technology. Discussions were recorded using field notes and written responses. Participants also completed a structured survey and indicated, from a list, words that best described their attitudes toward the technology.
Results: Participants (N=170; 120 CRC and 50 NBS) varied in attitude; more participants in the CRC groups indicated that they were “enthusiastic” or “optimistic”, while participants in the NBS workshops were more “worried” or had “mixed feelings”. More NBS participants were concerned that a result indicating increased
risk would cause extra worry compared to those in the CRC workshops (91% vs 49% respectively; p<0.01). Other differences included the relevance of results for their family (89% CRC vs 61% NBS; p<0.01 ). In both contexts concern was expressed regarding who had access to test results and implications for insurance. Conclusion: Consistent with previous studies in genetic testing, public attitudes appeared to be contingent on the context in which the genomic risk profiling technology was applied. Public attitudes to genomic technologies must, therefore, be considered in a nuanced, context-specific manner and broad brush assessments avoided. A one-size generic policy is unlikely to be satisfactory. That being said, concerns over access to test results and implications on for insurance were common to both contexts.

"Background: Newborn bloodspot screening (NBS) is an international population health intervention... more "Background: Newborn bloodspot screening (NBS) is an international population health intervention. Despite decades of NBS there is a paucity of data relating to parental information use when making decisions to accept screening. Studies have noted a range of sources but there is little evidence as to why
parents use certain types of information materials nor the relative importance placed on these. The present study addresses this deficit.

Methods: An exploratory sequential mixed methods approach using semi-structured interviews and a self-completion postal questionnaire.

Results: Consistent with Wilson's (1999) model of information-seeking parents could be distinguished as active-seekers
or passive-receivers of information. In the UK the main contact is the midwife and survey results indicated that the midwife was the principal information source; only half of parents used official leaflets. Barriers to use included provision post-natally and the inclusion with other, non-medical, leaflets and booklets. Multinomial logistic regression confirms the significant effect of the most important source in explaining the number of
information sources used (Likelihood Ratio Chi-square = 19.322, df=6, p=0.004). Passive-receivers, tended to cite their primary healthcare contact (the midwife) as the most important source and were more likely to use only that one source. Active-seekers sought out information not only from different perspectives but from more sources.

Discussion: The main practitioner contact (here the midwife) is the principal source of information for parents, irrespective of information-seeking behaviour, although their perceived importance varied. This person is best placed to act as a gate-keeper for parents seeking information about NBS. Parents should be provided with information in the pre-natal period in order to maximise information uptake. This should be supported by additional written materials. These materials should be clearly referenced."

Introduction: Newborn screening programmes, whilst offered to individuals, resemble traditional p... more Introduction: Newborn screening programmes, whilst offered to individuals, resemble traditional public health programmes because (a) they are targeted at large groups of the population and (b) they are offered as preventive interventions to a population considered healthy. For many programmes this potentially presents an ethical tension between the goal of promoting high uptake of supposedly ‘effective’ population oriented programs and the goal of promoting genuinely informed decision-making.

Methods: I explore this potential tension through an exploratory sequential mixed methods approach using an initial phase of qualitative interviews with parents (n=18) and a subsequent postal questionnaire (n=154). Qualitative data was coded using a thematic analysis approach with survey responses analysed using descriptive statistics and structural equation modelling (SEM).

Results: Interviews indicated that there may be discord between the stated aims of supporting informed choice and the practice of providing a population screening programme. In particular parents referred to aspects of proceduralisation and information presentation as diminishing the perceived availability of choice. Parents also noted aspects of timing that impacted on their ability to make considered informed decisions. Survey results suggested that ability to make a choice was of less concern than the availability of choice with 80% of parents agreeing to some degree that it had been expected that their child have the heel prick and over 30% indicating that they did not feel they had a choice to decline the screening. Perhaps most disconcerting was that over 10% of parents felt that they had not made an informed choice. SEM revealed the importance of this finding with perceived choice having a significant impact on the perceived quality of decision made and a standardised coefficient almost twice as large as the parents'

“It's frightening to think that you mark your children merely by being yourself. It seems unfair.... more “It's frightening to think that you mark your children merely by being yourself. It seems unfair. You can't assume the responsibility for everything you do --or don't do.” Simone de Beauvoir.

Empirical data shows disparities in childhood obesity incidence on the basis of income, gender and neighbourhood characteristics (Matheson et al., 2008; Harrington et al 2009). Do these findings identify a section of society that are morally culpable for the increase in childhood obesity, or do they point to structural inequities that serve to exacerbate existing inequalities?

The question of responsibility, and particularly parental responsibility, is central to discussions of interventions for childhood obesity. Responsibility may be considered in three distinct ways: causal responsibility, moral responsibility, and blameworthiness (Holm, 2009). Thus whilst parents may be causally responsible, together with others such as the advertising industry, food producers, and government, are they also morally responsible and/or blameworthy?

Empirical data, which shows disparities in childhood obesity incidence may point to a lack of moral responsibility or blameworthiness – at least in some parents.

This paper explores the issue of parental responsibility and suggests that the attribution of responsibility is far more complex than may at first appear and that whilst parents are causally responsible, in many cases the moral responsibility and attribution of blame must fall elsewhere. In particular I consider to what extent the state can be seen as morally responsible and the implications that these conclusions have for interventions in childhood obesity. (244 words)

Schemes that combine taxation of unhealthy foods with subsidies on healthy foods have been propos... more Schemes that combine taxation of unhealthy foods with subsidies on healthy foods have been proposed as a policy strategy to tackle diet-related disease. Such schemes may also help reduce health inequalities, as low-income groups are generally more sensitive to price. However, such strategies may be regressive in their effects on income, since low-income groups’ consumption of energy-dense foods exceeds that of higher-income groups (Friel et al., 2007). This concern is heightened by the existence not just of financial barriers to healthier diets (e.g. Gonzalez-Zapata et al., 2010) but also problems in accessing such foods (Larson et al., 2008) and limited time for food preparation (Slater et al. 2010). Thus, price policies alone may have limited effects on low-income groups’ food choices but exacerbate financial pressures.

We present data from the European IDEFICS study, which provides information on parents’ support for taxation/subsidy schemes. Across all countries studied, support for taxation/subsidy schemes was high and, in addition, significantly higher among low-income than higher-income groups.

Positive attitudes among lower-income groups towards taxation/subsidy schemes lend legitimacy to their use in addressing health inequalities despite concerns about regressivity. Further, they may indicate that individuals expect to respond to price changes by shifting consumption towards healthier foods (as predicted by Jensen & Smed, 2007). This would improve health outcomes while keeping food expenditure roughly equal, alleviating concerns about regressivity.

We conclude by noting several limitations of our argument. Firstly, parental attitudes may not reflect wider public opinion. Second, our data did not capture different ways of implementing such schemes (Waterlander 2010). Third, respondents may be overly optimistic about the ease of changing food consumption. Finally, taxation/subsidy schemes may worsen health outcomes indirectly (e.g. Yaniv et al., 2009).

Introduction: There is a trend of increasing weight amongst school-aged children. Studies indica... more Introduction: There is a trend of increasing weight amongst school-aged children. Studies indicate that up to a quarter of school-aged children may be overweight, with a tenth of these obese. The cost of food has been implicated in these increase, with energy-dense foods tending to be cheapest. Consequently, higher taxes on unhealthy foods and subsidies for healthy foods have been proposed as potential intervention measures. However, the successful implementation of any such policies are likely to be politically susceptible to public acceptance.

Methods: This paper draws on attitude data towards taxation and subsidisation generated from the first phase of the Identification and Prevention of Dietary and Lifestyle-induced Health Effects in Children and Infants (IDEFICS) parental questionnaire.

Results: The results indicate that parents show a high degree of support for taxation and subsidisation of food products, but that there is significant variation in support between countries.

Conclusion: These findings are consistent with recent data suggesting that public(s) are increasingly supportive of taxation and subsidisation policies yet are in conflict with the attitudes of other key stakeholders who are less supportive of taxation-subsidy policies. The implications of these findings and potential for policy interventions are discussed.

![Research paper thumbnail of "`To me it was just one thing that happened': parental consent and newborn bloodspot screening."](https://a.academia-assets.com/images/blank-paper.jpg)

Despite a national programme of newborn bloodspot screening (NBS) being in place since 1969, and ... more Despite a national programme of newborn bloodspot screening (NBS) being in place since 1969, and operating under a model of informed consent, research has tended to focus on technical knowledge not on how parental decisions are made. This paper presents research investigating parental experiences of NBS with a particular focus on perceptions of choice and notions of informed consent. Parents were identified and recruited through the Merseyside and Cheshire regional screening laboratory, Sure Start Centres and branches of the National Childbirth Trust. Snowballing was then used to identify further parents. Transcribed interviews were coded and drawn together into a thematic analysis. Parents often reported the procedure as being presented as routine rather than optional. Despite a lack of technical knowledge many parents felt they were sufficiently informed of the implications, and in many cases accepted on the basis of trust in professionals and the NHS. These findings suggest that notions of informed consent, with patients requiring technical knowledge of the procedure and basing decisions on this, are not being met. For some these details are not necessarily important and they feel sufficiently informed without specifics. This may well suggest that a reconsideration of constitutes an informed consent is required when considering parental decisions regarding newborn screening.

This paper will take a holistic approach, considering how structural equation modelling (SEM) is ... more This paper will take a holistic approach, considering how structural equation modelling (SEM) is to be used within a mixed methods study to investigate the influences on parental decision-making for newborn bloodspot screening, or what is commonly known as the heel prick.

The paper will provide an account of the current practice of newborn screening in the UK before discussing the initial qualitative phase of this research. This initial phase will provide not only the variables to be included in the later analysis, but also a theoretical mechanism through which the different influences interact. The analysis of this data will be considered and the process of linking this to quantitative analysis through SEM will be discussed. The paper will conclude by discussing how it is envisaged that SEM will be used, and a number of the issues that will need to be addressed.

At one end of the spectrum (figure 1) are programs where non-participation is essentially not an ... more At one end of the spectrum (figure 1) are programs where non-participation is essentially not an option, for example most newborn screening programs in the US are officially mandated. 2 At the other end lie jurisdictions, such as the UK, in which screening is offered explicitly on a choice basis. 3 In most Canadian provinces an 'implied consent' approach has generally been taken, whereby screening occurs by default unless there is a specific objection by the parents. 4 Recent policy in Ontario has signalled a move toward a standard of informed consent in which "verbal parental consent is required". 5

Methods and Analysis: Semi-structured interviews were conducted with parents whose children had been offered screening (n=28), healthcare professionals (n=19), and policy decision-makers (n=17). The study was undertaken in parallel at within Ontario and Newfoundland & Labrador. These sites vary in terms of both screening program structure and content, which may be presumed to influence experiences. Interviews were audio-recorded and transcribed verbatim prior to analysis. The examination of the transcripts followed a thematic analysis approach, in which textual data are coded and labelled in an inductive manner.

Results: Terms such as informed consent, implied consent, and standard-of-care were found to have different meanings to individuals. Understandings varied in terms of the perceived level and type of information required, whether authorization by the parent was necessary, as well as documentary evidence required. While variation between individuals was found, no consistent differences were identified between the two sites. For policy decision makers, a lack of formal policy may serve to propagate uncertainty and varied meanings.

Discussion: These data indicate that meaning of terms such as ‘informed consent’ may not be universal, and as such attitudes toward different consent approaches cannot be assumed to be based on consistent conceptualisations of terms. Detailed investigations of meaning are required to unpack the relevant elements upon which stakeholder attitudes toward consent approaches are based.

Newborn bloodspot screening (NBS) involves testing a small sample of blood taken from the heel of... more Newborn bloodspot screening (NBS) involves testing a small sample of blood taken from the heel of a newborn for a number of serious and life-threatening conditions. In Canada, the practice of NBS falls under provincial jurisdiction with no national coordination. We know little about the actual process of obtaining
informed consent for NBS and how these experiences might differ across provinces or between key stakeholders such as parents and healthcare professionals (HCP). This study will extend an emerging literature on the opinions and experiences of parents and HCPs regarding consent practices to newborn screening in Canada.

Parents' and Healthcare Professionals' Experiences of Consent for Newborn Bloodspot Screening. Available from: https://www.researchgate.net/publication/275520029_Parents%27_and_Healthcare_Professionals%27_Experiences_of_Consent_for_Newborn_Bloodspot_Screening [accessed Apr 27, 2015].

Newborn bloodspot screening is one of the oldest and largest population-based screening programs ... more Newborn bloodspot screening is one of the oldest and largest population-based screening programs in the world and involves testing blood taken via a heel prick for a number of serious and life limiting conditions. While there has been increasing debate about criteria for expanded screening, far less attention has been paid to the exclusion or removal of conditions from within existing panels. This is highly relevant given recent experiences of screening for Krabbe disease in New York: in five years of testing only a handful of cases have been identified at a cost of millions of dollars. In addition, some parents have received results where it remains uncertain if, how, when, or even if symptoms might appear and what could be done. Recent discussion in the field of implementation science has called for greater exploration of issues pertaining to the de-implementation of technologies and specifically “[research] to understand better the other, cognitive or political factors that facilitate or hinder de-implementation.” On the basis of review of existing de-implementation decisions, I explore the ethical and policy issues raised by de-implementation in the context of newborn bloodspot screening.