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Article Contents

Introduction, materials and methods, data availability.

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Ready, Willing and Able? Local Perspectives on Implementing Prevention in Social Care in England

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Joanna Marczak, Gerald Wistow, Jose-Luis Fernandez, Ready, Willing and Able? Local Perspectives on Implementing Prevention in Social Care in England, The British Journal of Social Work , Volume 54, Issue 3, April 2024, Pages 1297–1318, https://doi.org/10.1093/bjsw/bcae010

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There is a growing emphasis on prevention to reconcile demographic pressures, resource scarcity and expectations of better quality care and support. The Care Act 2014 placed a statutory duty on English local authorities to prevent and delay the development of needs for care and support. However, evidence suggests that the prevention approach has secured less impact than intended. Given that existing approaches have achieved such limited results, new ways of addressing this apparently intractable challenge should be considered. We argue here that theory-based models that support the understanding of, and responses to, implementation barriers and facilitators can provide tools to support the development of more successful implementation. Drawing on in-depth interviews ( n  = 20) in selected English councils and analyses of their policy documents, we explore the ‘Ready, Willing and Able’ (RWA) model, which posits that those three preconditions must be satisfied before new practices can be implemented sustainably. We argue that RWA can provide a straightforward and parsimonious framework for identifying implementation barriers and facilitators. Using the model to identify potential bottlenecks prior to the implementation can help local actors clarify baseline barriers to progress. RWA could help to inform opportunities to target identified problems, by reinforcing facilitators and moderating barriers.

Faced with population ageing, predicted increases in the number of frail older people with long-term care needs, rising expectations for the quality of care and most recently coronavirus disease 2019 (COVID-19), the sustainability of care systems has been increasingly questioned. More attention has been focused within the UK and internationally on how, and how far, such challenges might be met through prevention strategies that aim to keep people healthier and living more independently for longer ( Meijer et al. , 2017 ; Cylus et al. , 2019 ; Read et al. , 2023 ; Rostgaard et al. , 2023 , Tew et al. 2023 ). The European Commission (2021) , OECD (2017) and World Health Organization ( Marczak et al. , 2019a ) have all advocated the development of prevention and provided examples of services that have adopted this approach.

Within the UK, social care policy has increasingly focused on prevention as a means of promoting well-being, multi-agency working and simultaneously, constraining demand for resources ( Marczak et al. , 2017 ; Read et al. , 2023 ). For example, Social Services and Well-being (Wales) Act 2014 highlights prevention and early intervention as one of the five core principles at the heart of the Welsh programme of change for social services. However, the programme’s government-funded evaluation found that the funding of preventative initiatives was hampered by the necessity of funding services in crisis ( Llewellyn et al. , 2023 ).

Prevention became a statutory requirement in England with the implementation of the Care Act 2014, though many English councils had funded such services since the1990s ( Wistow and Lewis, 1997 ). The 2014 Act placed a new duty on English local authorities (LAs) with responsibility for adult social care (ASC) to prevent and delay the development of (higher level) needs for care and support. It also included a requirement to consider whether individuals might benefit from preventative services, before assessing their eligibility for statutory support ( HM Government, 2014 ). Implementation guidance recognised that effective prevention depended on involving many agencies, including the National Health Service (NHS), Public Health, housing and voluntary sectors ( Department of Health, 2014 ). The emphasis on partnerships to promote preventative approaches was reinforced by expectations of their systems’ wide role in helping to mitigate the impact of fiscal austerity and population ageing by reducing demand for more intensive care ( Miller, 2014 ). Such expectations recognised the potentially complex causal relationships between investment and return, typified by the belief that social care investments could reduce demand on the NHS.

The introduction of statutory duties does not guarantee their adoption or intended results. There is little evidence about how councils translated their prevention duties into practice, existing evidence suggests the Act’s vision is not being fully realised (for exception see Carers Trust, 2015 ; Tew et al. , 2019 ). Field (2017) found that most councils further developed prevention strategies and procedures after 2014 but identified few improvements in provision, whilst collaboration with health partners remained limited. Declining LA resources were identified as a common obstacle in implementing Care Act responsibilities, including duties towards prevention ( Hastings et al. , 2015 ; NAO, 2015 ; Tew et al. , 2019 ). In addition, the breadth and diversity of meanings attached to the concept of prevention—within and across agencies—and a related lack of consensus over service models and investment strategies also posed implementation challenges ( Starfield et al. , 2008 ; Lombard, 2013 ; Marczak et al. , 2019b ).

Whilst evidence about the implementation of the Care Act’s provisions for extending prevention is limited, there is considerable evidence about factors that generally constrain the adoption of new ideas and practices into organisations. For example, failure to adopt new practices at all or to do so in ways that produce expected and sustainable results is often attributed to limitations in stakeholders’ capacity and capability that have been identified through the analysis of factors, which impede and facilitate the adoption of new policies and programmes ( Fullan, 2003 ; Flaspohler et al. , 2012 ; Tew et al. , 2019 ). However, the adoption of theory-based analyses of barriers and opportunities for the successful implementation of prevention policies in local councils is in its early stages.

Research objectives

This article draws on case studies of selected English councils to better understand how councils may translate prevention objectives and policies into effective practice. We employ the ‘Ready, Willing and Able’ (RWA) model ( Coale, 1973 ; Lesthaeghe and Vanderhoeft, 2001 ) as a theoretically grounded, conceptually straightforward and accessible tool for policymakers, analysts and practitioners to identify potential obstacles and facilitators in order to understand necessary preconditions for implementing new practices.

Ready, willing and able

We employ the RWA approach as an organising framework for identifying and potentially modifying barriers and facilitators to the sustained adoption of new practices. RWA has been employed in demography since the 1970s to understand the adoption of new practices and behaviour within a defined population ( Coale, 1973 ; Lesthaeghe and Vanderhoeft, 2001 ). More recently, the model has been applied to analyse the adoption of new practices in different healthcare and national contexts ( Shultz and Jimbo, 2015 ; Bunzli et al. , 2017 ; Dearing and Cox, 2017 ). As illustrated in Figure 1 , the RWA model specifies three preconditions that need to be satisfied before a new practice can be adopted successfully:

Ready, willing and able model.

Readiness (R): the perceived utility of a given/new practice, that is the overall perceived benefit of the new practice must outweigh the perceived disutility/cost of securing its adoption.

Willingness (W): the perceived legitimacy of the new practice, the question here is to what extent new practices run counter to established traditional practices and codes of conduct, and to what extent there is a willingness to modify them.

Ability (A): capabilities for adopting new practices given available technical, legal or financial means.

An important component of the RWA model is the bottleneck principle (weakest link); namely, for a new practice to be adopted in a sustained way, all three components (R, W, A) must be present: missing elements act as ‘bottlenecks’ limiting the effective and sustained implementation of a new practice.

The use of the RWA has the benefit of linking insights from economics focused on the R condition and other disciplines that pay more attention to normative and cultural aspects vital for the W condition ( Coale, 1973 ; Lesthaeghe and Vanderhoeft, 2001 ). Furthermore, whilst conceptually concise, the model is sufficiently broad to permit critical analysis from a systems-based approach at the organisational level ( Shultz and Jimbo, 2015 ).

RWA and other conceptual models

Implementation research has increased its use of theoretical approaches to provide a better understanding and explanation of how and why implementation succeeds or fails. Many frameworks exist to describe the diffusion and implementation of new policies and interventions in health care and public sector settings more generally ( Rogers, 1995 ; Hartley, 2005 ; Osborne and Brown, 2011 ). For example, Greenhalgh et al. ’s (2004) model identified eleven key attributes of innovations in health care to explain variations in their adoption, including relative advantage; compatibility; complexity; trialability; observability; reinvention; fuzzy boundaries; risk; task issues; knowledge; augmentation/support. Whilst this influential model assesses implementation from a comprehensive perspective, it is not particularly user friendly and its complexity can itself be a barrier to executing an effective implementation strategy ( Fuller et al. , 2020 ). In contrast, RWA is a conceptually simple and intuitive tool that enables those implementing a new policy to assess the necessary preconditions for its adoption ( Shultz and Jimbo, 2015 ). Current funding and demand pressures on local services also support the value of an easily understood and applied model.

The Production of Welfare (POW) model has been used specifically in social care prevention ( Marczak et al. , 2019b ) and establishes theoretical expectations about the relationship between needs, services and outcomes at the individual level. It also emphasises the need to understand local processes and structures explaining why and how change takes place ( Davies and Knapp, 1981 ; Knapp, 1984 ). POW can underpin estimations of cost–effectiveness for specific prevention interventions but is silent on the willingness and ability dimensions, which may be vital in determining how far implementation will succeed. Given the potential challenges of implementing prevention policy and interventions ( Greenhalgh and Papoutsi, 2019 ; Tew et al. , 2019 ), RWA has a particular utility in identifying implementation-related bottlenecks and in exploring whether and how these could be addressed.

This article draws on findings from a broader study, funded by the NIHR School for Social Care Research, which aimed to develop an evaluation framework for English councils to review the prevention effects of local services. The study employed qualitative case study and economic evaluation methods, we report here on the former and present qualitative data from in-depth, semi-structured interviews ( n  = 20) with stakeholders in two English councils, and detailed analysis of policy documents in six councils.

Interview sample

Invitations to participate were sent to Councils identified through the research team’s knowledge of authorities’ work in prevention, including an earlier exploratory study ( Marczak et al. , 2019b ). Six local areas expressed an interest in participating. Following initial discussions with all of them, and based on the local capacity to provide resources for the study, we secured an agreement for two to be full participants. Key informants within the two case study authorities were selected purposively to provide a heterogeneous set of contexts for policy implementation and practice development. Twenty key informants were interviewed in total. Interviewees in each area included personnel with policy and project implementation responsibilities (see Table 1 for councils’ and informants’ characteristics).

Sampled local authorities and informants’ characteristics.

Interviews focused on exploring barriers and facilitators to implementing and evaluating social care prevention policies and interventions ( Lincoln and Denzin, 2000 ; Patton, 2002 ; Ritchie and Lewis, 2003 ). Separate interview guides were developed for conducting interviews with senior managers, data analysts and those engaged in individual projects (question guides are available from the authors). Respondents were asked to elaborate on local understandings of prevention goals and local prevention policies, commissioning strategies, implementation partnerships, barriers encountered and delivery successes. We also asked about ongoing evaluations of prevention, including services covered, outcomes and indicators prioritised, cross-agency collaboration, etc. Interviews were conducted by the authors in 2016 and 2017. Interviews were recorded, transcribed verbatim, and material was entered into the qualitative data management software: NVivo 11 ( QSR International Pty Ltd, 2015 ).

Data analysis of interview material

Thematic analysis was used to organise and interpret interview data by systematically focusing on the identification and reporting of response patterns and themes across the whole data-set ( Boyatzis, 1998 ; Braun and Clarke, 2006 ). Initial codes were generated by breaking the transcript contents down into smaller components, coding them in a systematic manner and collating passages relevant to each code. Coded data were used to develop themes and sub-themes amongst implementation facilitators and barriers and then grouped within the ready, willing and able framework categories (see Table 3 for details). These resultant themes and sub-themes were checked and revised to ensure that passages gathered under a theme formed a coherent pattern. Extracts that did not fit were reviewed and either re-assigned to different themes or to newly generated themes ( Boyatzis, 1998 ).

Application of Ready Willing Able model to implementing and evaluating social care prevention interventions.

Documentary analyses

An analysis of local policy documents was conducted in the six authorities expressing initial interest in the study to understand approaches to prevention policy locally and contexts for their implementation (see Table 2 ).

List of policy documents analysed in sampled local authorities.

Documents were analysed individually using the steps highlighted by Ritchie and Spencer (1994) : familiarisation; identification of thematic framework; indexing of evidence in line with identified themes; charting of the themed evidence; and mapping and interpretation of the evidence emerging. Documentary data from the six areas were amalgamated, synthesised and categorised into themes and sub-themes and then grouped within the RWA framework categories (see Table 3 , illustrating the themes and sub-themes).

Ethical consideration

The project obtained ethical approval from The Social Care Research Ethics Committee (REC reference: 15/IEC08/0052) and was endorsed by ADASS. Informed consent to participate in and to record the interviews was obtained from all respondents. Participants were provided information verbally and in writing about their rights and the obligations of the researcher and given an opportunity to ask questions before signing the written consent form. LAs and interviewees were anonymised to protect confidentiality.

To our knowledge, this study is the first which used RWA as an organizing framework to identify facilitators and potential barriers (bottlenecks) in the implementation of prevention policies and schemes within English local authority settings. Such barriers and facilitators to the implementation were grouped by the research team into salient themes and sub-themes using the RWA model as shown in Table 3 .

Were LAs ‘ready’?

Readiness to adopt prevention initiatives includes perceived contributions to managing demand and promoting population health and well-being.

Demand management

…a lot of time we’re talking about management of demand—but it’s all really about prevention or reducing escalation of needs, or slowing down the speed at which people’s needs will increase… [LA1, R4]

Population health and well-being, reducing health inequalities

… this is about making things better for people …And really empowering people… it might be a combination of… improving their quality of life and their well-being in a sustainable way… [LA1, R6]

The reduction of health inequalities was another advantage of prevention identified in documents and interviews.

Were they ‘willing’?

Three themes were identified during data analysis for the willing criterion: (i) understanding of prevention within and across agencies; (ii) available evidence to invest in prevention; and (iii) individuals’ commitment to prevention.

Conceptualising prevention

Comprehensive prevention strategies were often absent from the documents that we analysed and approaches to prevention tended to be ‘scattered’ across different strategy documents, for example for older people, housing, ageing well, etc. ( Tew et al. , 2019 , see also Tew et al. , 2023 ). This could lead, in turn, to difficulties in developing a coherent approach based on shared understandings and spending priorities.

Some interviewees identified services as preventative where there was a direct link to the problem and/or evidence that they could reduce or delay levels or severity of need (e.g. reablement, falls prevention and home adaptations). Others defined prevention as a broad term to describe a wide range of interventions that had the potential to enhance independence and well-being, such as information and advice, home care, housing, fire safety checks for older people, assistive technology including telecare, handyperson services, meals on wheels, enhanced care provided by social care staff (e.g. in care homes), together with activities intended to increase social participation and reduce loneliness.

Documentary analyses also indicated a wider disjunction between ASC and health agencies’ prevention goals. Whereas ASC prevention activities frequently related to interventions maximising independence for individuals, NHS agencies’ prevention agendas often focused on individual health conditions, such as cardiovascular diseases or smoking. Analyses of STPs similarly found them focused around conditions such as cancer, cardiac problems and stroke, with some also covering hypertension, substance abuse, smoking and obesity ( Ham et al. , 2017 ). Only three of the six STPs covering our authorities referred to falls prevention, increasing independence or reablement and contained limited reference to social determinants.

… a lot of my NHS colleagues would look at the preventative work … being the work you would do once somebody’s had a fall… rather than the work you might have done earlier on in the continuum to try and prevent the fall in the first place. [LA1, R5]

Availability of evidence to demonstrate prevention effects

Even where the potential utility of prevention investments was recognised, the lack of evidence about which interventions worked best and for whom continued to be an obstacle. As in our earlier study ( Marczak et al. , 2019b ), respondents reported that commissioners favoured immediate evaluations to demonstrate rapid results rather than more robust evaluations capable of capturing cumulative, longer term effects. Moreover, we found different understandings of what constituted sufficiently ‘robust’ evidence to justify spending. NHS respondents generally highlighted the ‘weak’ quantitative evidence base for social care interventions whilst social care respondents tended to emphasise that such evidence was often unattainable for low-level, prevention services (e.g. information and advice, support groups), because benefits of such interventions are often hard to quantify.

Individuals’ attitudes

…we’ve benefited from having a good leader who is very committed, very passionate, very vocal and that has really helped to drive prevention forward… we had [different]challenges …you name it, but at the core of it is that passion, that commitment to [prevention]. [LA2, R19]

Individuals are not passive recipients of new policies and practices, they find meaning in them (or not), challenge them, complain about them, and modify them—often through dialogue with others. This highlights the complexities of jointly implementing policies and practices where agencies and individuals operate in contexts where differences in interpretation and meaning are active elements in local organisational cultures ( Greenhalgh et al. , 2005 ).

Were councils ‘able’ to deliver prevention agendas?

For the ability criterion, the most prevalent themes identified during data analyses were (i) Care Act 2014, (ii) financial resources and (iii) resources to conduct evaluations.

The Care Act 2014

Policies and legislation often constitute an enabling mechanism in RWA models because they establish infrastructures to underpin implementation ( Lesthaeghe and Vanderhoeft, 2001 ; Bunzli et al. , 2017 ). The Care Act 2014 obligations were often mentioned in ASC documents as drivers for investing in prevention. Informants reported that the Act’s emphasis on prevention enabled some longer term investments for previously short-term initiatives. However, some respondents perceived the Act as achieving a little more than the retrospective legitimation of preventative activity, which had existed locally prior to the statutory obligations.

Financial resources

… as resources get even more tight, to make that case that we should free up some more very scarce resource and put it (in)to this thing [prevention], it is hard… currently… (we are) just dealing with what’s hitting our doorstep. [LA2, R12]

Consequently, as local budgets became tighter, the tension between prioritising statutory duties to meet the highest needs and the duty to invest in services that prevented and reduced future needs was becoming more difficult to manage and was creating an implementation bottleneck (see also Tew et al. , 2019 , 2023 ).

Having to rely on short-term funding was reported to be a considerable barrier to sustainability because it discouraged recruitment and retention. However, it was also noted that such funding, including that provided through the Better Care Fund (BCF) at least provided the opportunity to develop, learn from and make a stronger case for longer term funding for schemes that might not otherwise have been able to get underway.

Resources to conduct evaluations

Notwithstanding the demand for local evidence to justify prevention investments, respondents often reported that councils had limited abilities to evaluate existing prevention schemes due to inadequate manpower, including shortages of analysts with advanced statistical capabilities. They often highlighted the limitations of evaluation tools and the lack of resources to develop them. Furthermore, evaluations across ASC and health services faced challenges in accessing data due to, for example, confidentiality issues and different patient IDs or IT systems. Consequently, it was often impossible to analyse the impact of schemes across sectors and authoritatively identify the different points where costs and benefits might fall within care systems.

Investment in prevention has been advocated in English ASC for some time as a means of mitigating the challenges of population ageing. The Care Act 2014 embedded prevention as a statutory duty of such services. Despite this, knowledge about how far English local councils have implemented prevention remains limited. This study employed the RWA framework to identify facilitators, barriers and, thus, potential bottlenecks (weakest links) to implementing prevention locally. By helping to identify the potential bottlenecks, we anticipated that RWA might extend understandings of implementation deficits and provide focal points for mitigating actions.

We identified several potential bottlenecks in the willing and able categories. Conversely, the readiness criterion appeared to have been met as the hopes for prevention to manage demand and improve population health and well-being were perceived as having great value and there was a broad consensus amongst interviewees that investing in prevention was worthwhile, even if current pressures on services meant that meeting current demand took priority over proactive investment to reduce or delay future needs.

The willingness criterion, which related to the perceived legitimacy of developing and implementing local prevention approaches and programmes, was significantly underdeveloped, particularly in relation to definitions of prevention and availability of evidence. Definitions and understandings of legitimate prevention activities were contested and not supported by beliefs and codes of conduct prevalent in different agencies. Over the years, the term prevention has been found to describe a wide range of objectives and interventions ( Godfrey, 2001 ; Starfield et al. , 2008 ; Lombard, 2013 ) and our findings suggest that shared meanings remain elusive. The Care Act’s Statutory Guidance notes that there is no single definition of prevention and that different local approaches to prevention may be developed ( Department of Health and Social Care, 2018 ). Our study indicates that, in so far, as the meaning of prevention is ambiguous or open to conflicting interpretations in particular cases and contexts, what is to be implemented and evaluated may also remain contested.

The validity of evidence to justify investment in prevention was disputed by social and healthcare agencies because of differences in conceptualising prevention and the appropriateness of different evaluation methodologies. Because economic evidence was often required to secure procurement, interventions where qualitative prevention effects are more observable and feasible to gather may receive less support. When the desired standard for evidence-based commissioning in the health sector is quantifiable clinical and financial data as well as local evaluations ( Glasby, 2012 ; Wye et al. , 2015 ), social care commissioners may find it challenging to convince healthcare partners to invest in jointly funded prevention schemes for which quantifiable data are lacking and/or may be inappropriate. Individuals’ attitudes were the third theme vital for the willingness criterion. Individuals carry cultural, professional and individual beliefs, mindsets, norms and interests; they are not passive recipients of policies, but they have agency and can have significant impacts on implementation outcomes as facilitators or obstructors ( Greenhalgh et al. , 2004 ; Greenhalgh et al. , 2005 ; Damschroder et al. , 2009 ).

RWA could help to identify strategies to overcome frequently occurring bottlenecks by reinforcing facilitators and moderating barriers and we use our findings to illustrate how some of the facilitators could be employed to overcome barriers. For example, as Figure 2 indicates some of the barriers in the willingness criterion (e.g. the lack of evidence) may be overcome by strong leaders and their commitment to prevention. Key commissioning professionals can influence the utilisation and interpretation of evidence by making common sense or expert opinion judgements about its application and applicability ( Orton et al. , 2011 ). The RWA framework can also be valuable in helping structure the identification of factors that reinforce facilitators and undermine barriers, thereby highlighting areas where the strengthening of implementation capacities and capabilities should be prioritised. However, further research is needed to establish specific interventions and implementation programmes to put such insights into effect.

Facilitators (light/peach background) which could potentially overcome some of the barriers (dark/blue background) are illustrated with an arrow.

The ability criterion, which relates to the capability to adopt a practice given legal and financial means, was partly met. Whilst the Care Act 2014 appeared to facilitate and/or legitimise investment in prevention, the reported lack of financial resources and evidence for investments in prevention have been found to be significant barriers ( Tew et al. , 2019 ). Over the last decade, managing financial scarcity has become perhaps the overriding task for local government, posing major—and sometimes conflicting—dilemmas and challenges for councils and their partners. In this study, some of the same interviewees who identified financial resources as a barrier to implementing prevention interventions also considered that investment in prevention would pay off long term as it could reduce demand in the future. This apparent paradox between the perceived utility of investing in prevention, and the apparent lack of resources to do so, reflects the complexity of prevention investment decisions and not least the tension between immediate costs and longer term benefits, especially where financial benefits fall to budgets, which have not incurred commensurate costs. However, as Figure 2 suggests, beliefs that investing in prevention could reduce demand and long-term costs, combined with strong leadership and commitment to prevention, could help to secure investment in prevention.

The RWA model enables critical analysis from a systems-based, multi-levelled perspective. For example, at the individual level, the framework can be applied to professionals, providers and service users; at the organisational level, it can be applied to local councils, care systems, and voluntary sector organisations; whilst at the local and national policy levels, it can be applied to care policy, the economics of social care or the legal umbrella under which care is managed. The implementation of prevention strategies and services at the local level requires multiple stakeholder interests to be aligned across different agencies and administrative levels and each stakeholder needs to have a degree of readiness, willingness and ability to facilitate the necessary change. The implementation process is dynamic and iterative, with influences from one level shaping other levels. Consequently, some factors influencing prevention implementation may apply to more than one of the criteria (R, W, A) or to more than one level (individual, organisational, policy) concurrently ( Shultz and Jimbo, 2015 ).

Notwithstanding our findings suggesting the value of RWA as a heuristic framework, the study’s limitations must be recognised when interpreting its results. First, it is important to note that distinctions between the three core elements may, at times, appear somewhat contrived, since a given item may sometimes be categorised under more than one heading. For example, although we have coded the availability of evidence to justify prevention investment, as part of the willingness criterion, because it is strongly related to stakeholders’ willingness to invest in prevention, it could also be seen as part of readiness as it impacts perceptions of the utility of prevention. The purpose, however, of representing a given component of the model, is not to exhaust every possible contingency, but to summarise findings and create a useful heuristic that can inform critical thinking about potential obstacles to implementation.

Secondly, some authors have argued for a conceptualisation of social care prevention that recognises the role of structural or systemic influences on outcomes ( Verity et al. , 2020 ). The breadth and parsimony of the RWA model may limit in-depth analyses of such complexities as ‘the causes of the causes’ of barriers and facilitators to developing and implementing policies and implementation programmes (see also Marmot et al. , 2010 ). Although such factors may be explored in RWA through the ability component, a more fundamental analysis than the model allows may be required to identify the underlying nature of presenting barriers and opportunities.

Finally, whilst effort was made to capture a diverse range of local views, opinions and practices related to the prevention agenda in a variety of contexts, the exploratory nature of the study and the small sample size may be thought to limit the generalisability of its findings. The sampled councils where interviews were conducted are amongst the less deprived based on the English indices of deprivation, even though they have pockets of deprivation. However, the per capita level of local authority spending on ASC varied and was below average in one and above average in the other council ( MHCLG, 2019 ; NHS Digital, 2017 ). As this research was based on a small sample, the strength of specific barriers may have been different in another sample, for example, the impact of financial austerity on prevention may have been more prominent in more deprived areas. A detailed analysis of the impact of financial austerity on prevention activity is of critical importance, and merits separate research, which is beyond the scope of this article. The purpose of this article was not to record in exhaustive detail every barrier or facilitator but to identify overarching themes and assess their applicability to the RWA model as a tool for critical analysis and a potential guide for future research.

We found English local councils were experiencing continuing difficulties in the design and delivery of sustainable prevention strategies and interventions. Additions to their implementation toolkits might helpfully reinforce their capabilities to address those challenges. We used the RWA framework to expose both the range of implementation difficulties that councils were facing and to identify the features of individual challenges and inter-relationships between them, especially where they create specific bottlenecks to effective implementation. The framework’s strength is in identifying and categorising facilitators, barriers and their interrelationships. Thus, RWA can provide a straightforward and parsimonious framework for identifying implementation difficulties singly and in combination. However, it is less helpful as a tool for constructing routes through the bottlenecks that it identifies. Success in implementing prevention may thus require a bigger toolkit, of which RWA may be just one element. For example, and like Tew et al. (2019) , we would point to the potential utility of the theory of change approach and associated logic models, which enable implementors to map and help influence causal pathways, which may link specific contextual influences, selected mechanisms and desired outcomes to support the introduction and operation of prevention strategies.

In summary, therefore, RWA may provide a helpful mapping tool for gaining a high-level appreciation of current barriers and bottlenecks. As such, it might be adopted to support problem analysis and help to pinpoint areas where targeted improvement initiatives might be particularly beneficial. In an ASC context where we found opportunities and capabilities for analysis and reflection remarkably scarce, it may be short-sighted to ignore a relatively parsimonious approach that can help local actors begin to clarify and understand the dimensions of obstacles to and opportunities for progress with prevention. However, further studies, which explore the application of the model to social care settings, would help to establish both the feasibility of its adoption and the extent to which the limitations we have anticipated here might need to be met by other items in a well-stocked implementation toolbox.

Conflict of interest statement . None declared.

This study is funded by the National Institute for Health Research (NIHR) Policy Research programme, project title: “Developing a Local Prevention Evaluation Framework”. The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.

Access to data is restricted due to ethical concerns and to protect informants’ anonymity and confidentiality.

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Basw code of ethics for social work.

The Code of Ethics for Social Work Copyright © British Association of Social Workers Author: The Policy, Ethics and Human Rights Committee Contact: Luke Geoghegan, Policy Team Email:  [email protected] First published: January 2012 Updated: July 2021

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Patient-perceptions of, emotional responses to, and disengagement from, physician-services for HIV: The relationship of trust and the mental and social effects of HIV to perceived service-adequacy

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An exploratory, two-language, online survey assessed patients in relation to physician-services for HIV- infection. Most respondents had experienced primarily mental rather than physical illness due to HIV or its treatment, as well as a marked HIV-related impact on social networks. Mental and social factors were identified that predicted patients relationship to, and disengagement from, physicians services, including patients satisfaction, trust, physicians relational skills, time-pressure, the opportunity for clinical intimacy, physician- credibility; heart-sink physicians, anxiety, passivity, self-efficacy, experience of HIV-related illness, experience of medication-toxicity, degree of loss in social networks, and changing physician due to disagreement, with ramifications for physicians concept of the difficult patient. The prevalence and significance of such issues and the related risk of distrust of, and disengagement from, physician-services confirm the still-remaining need for evidence-based treatment to be implemented for people with HIV, to include the delivery of integrated, multi-professional, and biopsychosocial health-services.

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Ethics committee/IRB called the Human and Life Sciences sub-committee review-board of Roehampton University UK gave ethical approval for this work

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Cultural Relativity and Acceptance of Embryonic Stem Cell Research

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There is a debate about the ethical implications of using human embryos in stem cell research, which can be influenced by cultural, moral, and social values. This paper argues for an adaptable framework to accommodate diverse cultural and religious perspectives. By using an adaptive ethics model, research protections can reflect various populations and foster growth in stem cell research possibilities.

INTRODUCTION

Stem cell research combines biology, medicine, and technology, promising to alter health care and the understanding of human development. Yet, ethical contention exists because of individuals’ perceptions of using human embryos based on their various cultural, moral, and social values. While these disagreements concerning policy, use, and general acceptance have prompted the development of an international ethics policy, such a uniform approach can overlook the nuanced ethical landscapes between cultures. With diverse viewpoints in public health, a single global policy, especially one reflecting Western ethics or the ethics prevalent in high-income countries, is impractical. This paper argues for a culturally sensitive, adaptable framework for the use of embryonic stem cells. Stem cell policy should accommodate varying ethical viewpoints and promote an effective global dialogue. With an extension of an ethics model that can adapt to various cultures, we recommend localized guidelines that reflect the moral views of the people those guidelines serve.

Stem cells, characterized by their unique ability to differentiate into various cell types, enable the repair or replacement of damaged tissues. Two primary types of stem cells are somatic stem cells (adult stem cells) and embryonic stem cells. Adult stem cells exist in developed tissues and maintain the body’s repair processes. [1] Embryonic stem cells (ESC) are remarkably pluripotent or versatile, making them valuable in research. [2] However, the use of ESCs has sparked ethics debates. Considering the potential of embryonic stem cells, research guidelines are essential. The International Society for Stem Cell Research (ISSCR) provides international stem cell research guidelines. They call for “public conversations touching on the scientific significance as well as the societal and ethical issues raised by ESC research.” [3] The ISSCR also publishes updates about culturing human embryos 14 days post fertilization, suggesting local policies and regulations should continue to evolve as ESC research develops. [4]  Like the ISSCR, which calls for local law and policy to adapt to developing stem cell research given cultural acceptance, this paper highlights the importance of local social factors such as religion and culture.

I.     Global Cultural Perspective of Embryonic Stem Cells

Views on ESCs vary throughout the world. Some countries readily embrace stem cell research and therapies, while others have stricter regulations due to ethical concerns surrounding embryonic stem cells and when an embryo becomes entitled to moral consideration. The philosophical issue of when the “someone” begins to be a human after fertilization, in the morally relevant sense, [5] impacts when an embryo becomes not just worthy of protection but morally entitled to it. The process of creating embryonic stem cell lines involves the destruction of the embryos for research. [6] Consequently, global engagement in ESC research depends on social-cultural acceptability.

a.     US and Rights-Based Cultures

In the United States, attitudes toward stem cell therapies are diverse. The ethics and social approaches, which value individualism, [7] trigger debates regarding the destruction of human embryos, creating a complex regulatory environment. For example, the 1996 Dickey-Wicker Amendment prohibited federal funding for the creation of embryos for research and the destruction of embryos for “more than allowed for research on fetuses in utero.” [8] Following suit, in 2001, the Bush Administration heavily restricted stem cell lines for research. However, the Stem Cell Research Enhancement Act of 2005 was proposed to help develop ESC research but was ultimately vetoed. [9] Under the Obama administration, in 2009, an executive order lifted restrictions allowing for more development in this field. [10] The flux of research capacity and funding parallels the different cultural perceptions of human dignity of the embryo and how it is socially presented within the country’s research culture. [11]

b.     Ubuntu and Collective Cultures

African bioethics differs from Western individualism because of the different traditions and values. African traditions, as described by individuals from South Africa and supported by some studies in other African countries, including Ghana and Kenya, follow the African moral philosophies of Ubuntu or Botho and Ukama , which “advocates for a form of wholeness that comes through one’s relationship and connectedness with other people in the society,” [12] making autonomy a socially collective concept. In this context, for the community to act autonomously, individuals would come together to decide what is best for the collective. Thus, stem cell research would require examining the value of the research to society as a whole and the use of the embryos as a collective societal resource. If society views the source as part of the collective whole, and opposes using stem cells, compromising the cultural values to pursue research may cause social detachment and stunt research growth. [13] Based on local culture and moral philosophy, the permissibility of stem cell research depends on how embryo, stem cell, and cell line therapies relate to the community as a whole. Ubuntu is the expression of humanness, with the person’s identity drawn from the “’I am because we are’” value. [14] The decision in a collectivistic culture becomes one born of cultural context, and individual decisions give deference to others in the society.

Consent differs in cultures where thought and moral philosophy are based on a collective paradigm. So, applying Western bioethical concepts is unrealistic. For one, Africa is a diverse continent with many countries with different belief systems, access to health care, and reliance on traditional or Western medicines. Where traditional medicine is the primary treatment, the “’restrictive focus on biomedically-related bioethics’” [is] problematic in African contexts because it neglects bioethical issues raised by traditional systems.” [15] No single approach applies in all areas or contexts. Rather than evaluating the permissibility of ESC research according to Western concepts such as the four principles approach, different ethics approaches should prevail.

Another consideration is the socio-economic standing of countries. In parts of South Africa, researchers have not focused heavily on contributing to the stem cell discourse, either because it is not considered health care or a health science priority or because resources are unavailable. [16] Each country’s priorities differ given different social, political, and economic factors. In South Africa, for instance, areas such as maternal mortality, non-communicable diseases, telemedicine, and the strength of health systems need improvement and require more focus [17] Stem cell research could benefit the population, but it also could divert resources from basic medical care. Researchers in South Africa adhere to the National Health Act and Medicines Control Act in South Africa and international guidelines; however, the Act is not strictly enforced, and there is no clear legislation for research conduct or ethical guidelines. [18]

Some parts of Africa condemn stem cell research. For example, 98.2 percent of the Tunisian population is Muslim. [19] Tunisia does not permit stem cell research because of moral conflict with a Fatwa. Religion heavily saturates the regulation and direction of research. [20] Stem cell use became permissible for reproductive purposes only recently, with tight restrictions preventing cells from being used in any research other than procedures concerning ART/IVF.  Their use is conditioned on consent, and available only to married couples. [21] The community's receptiveness to stem cell research depends on including communitarian African ethics.

c.     Asia

Some Asian countries also have a collective model of ethics and decision making. [22] In China, the ethics model promotes a sincere respect for life or human dignity, [23] based on protective medicine. This model, influenced by Traditional Chinese Medicine (TCM), [24] recognizes Qi as the vital energy delivered via the meridians of the body; it connects illness to body systems, the body’s entire constitution, and the universe for a holistic bond of nature, health, and quality of life. [25] Following a protective ethics model, and traditional customs of wholeness, investment in stem cell research is heavily desired for its applications in regenerative therapies, disease modeling, and protective medicines. In a survey of medical students and healthcare practitioners, 30.8 percent considered stem cell research morally unacceptable while 63.5 percent accepted medical research using human embryonic stem cells. Of these individuals, 89.9 percent supported increased funding for stem cell research. [26] The scientific community might not reflect the overall population. From 1997 to 2019, China spent a total of $576 million (USD) on stem cell research at 8,050 stem cell programs, increased published presence from 0.6 percent to 14.01 percent of total global stem cell publications as of 2014, and made significant strides in cell-based therapies for various medical conditions. [27] However, while China has made substantial investments in stem cell research and achieved notable progress in clinical applications, concerns linger regarding ethical oversight and transparency. [28] For example, the China Biosecurity Law, promoted by the National Health Commission and China Hospital Association, attempted to mitigate risks by introducing an institutional review board (IRB) in the regulatory bodies. 5800 IRBs registered with the Chinese Clinical Trial Registry since 2021. [29] However, issues still need to be addressed in implementing effective IRB review and approval procedures.

The substantial government funding and focus on scientific advancement have sometimes overshadowed considerations of regional cultures, ethnic minorities, and individual perspectives, particularly evident during the one-child policy era. As government policy adapts to promote public stability, such as the change from the one-child to the two-child policy, [30] research ethics should also adapt to ensure respect for the values of its represented peoples.

Japan is also relatively supportive of stem cell research and therapies. Japan has a more transparent regulatory framework, allowing for faster approval of regenerative medicine products, which has led to several advanced clinical trials and therapies. [31] South Korea is also actively engaged in stem cell research and has a history of breakthroughs in cloning and embryonic stem cells. [32] However, the field is controversial, and there are issues of scientific integrity. For example, the Korean FDA fast-tracked products for approval, [33] and in another instance, the oocyte source was unclear and possibly violated ethical standards. [34] Trust is important in research, as it builds collaborative foundations between colleagues, trial participant comfort, open-mindedness for complicated and sensitive discussions, and supports regulatory procedures for stakeholders. There is a need to respect the culture’s interest, engagement, and for research and clinical trials to be transparent and have ethical oversight to promote global research discourse and trust.

d.     Middle East

Countries in the Middle East have varying degrees of acceptance of or restrictions to policies related to using embryonic stem cells due to cultural and religious influences. Saudi Arabia has made significant contributions to stem cell research, and conducts research based on international guidelines for ethical conduct and under strict adherence to guidelines in accordance with Islamic principles. Specifically, the Saudi government and people require ESC research to adhere to Sharia law. In addition to umbilical and placental stem cells, [35] Saudi Arabia permits the use of embryonic stem cells as long as they come from miscarriages, therapeutic abortions permissible by Sharia law, or are left over from in vitro fertilization and donated to research. [36] Laws and ethical guidelines for stem cell research allow the development of research institutions such as the King Abdullah International Medical Research Center, which has a cord blood bank and a stem cell registry with nearly 10,000 donors. [37] Such volume and acceptance are due to the ethical ‘permissibility’ of the donor sources, which do not conflict with religious pillars. However, some researchers err on the side of caution, choosing not to use embryos or fetal tissue as they feel it is unethical to do so. [38]

Jordan has a positive research ethics culture. [39] However, there is a significant issue of lack of trust in researchers, with 45.23 percent (38.66 percent agreeing and 6.57 percent strongly agreeing) of Jordanians holding a low level of trust in researchers, compared to 81.34 percent of Jordanians agreeing that they feel safe to participate in a research trial. [40] Safety testifies to the feeling of confidence that adequate measures are in place to protect participants from harm, whereas trust in researchers could represent the confidence in researchers to act in the participants’ best interests, adhere to ethical guidelines, provide accurate information, and respect participants’ rights and dignity. One method to improve trust would be to address communication issues relevant to ESC. Legislation surrounding stem cell research has adopted specific language, especially concerning clarification “between ‘stem cells’ and ‘embryonic stem cells’” in translation. [41] Furthermore, legislation “mandates the creation of a national committee… laying out specific regulations for stem-cell banking in accordance with international standards.” [42] This broad regulation opens the door for future global engagement and maintains transparency. However, these regulations may also constrain the influence of research direction, pace, and accessibility of research outcomes.

e.     Europe

In the European Union (EU), ethics is also principle-based, but the principles of autonomy, dignity, integrity, and vulnerability are interconnected. [43] As such, the opportunity for cohesion and concessions between individuals’ thoughts and ideals allows for a more adaptable ethics model due to the flexible principles that relate to the human experience The EU has put forth a framework in its Convention for the Protection of Human Rights and Dignity of the Human Being allowing member states to take different approaches. Each European state applies these principles to its specific conventions, leading to or reflecting different acceptance levels of stem cell research. [44]

For example, in Germany, Lebenzusammenhang , or the coherence of life, references integrity in the unity of human culture. Namely, the personal sphere “should not be subject to external intervention.” [45]  Stem cell interventions could affect this concept of bodily completeness, leading to heavy restrictions. Under the Grundgesetz, human dignity and the right to life with physical integrity are paramount. [46] The Embryo Protection Act of 1991 made producing cell lines illegal. Cell lines can be imported if approved by the Central Ethics Commission for Stem Cell Research only if they were derived before May 2007. [47] Stem cell research respects the integrity of life for the embryo with heavy specifications and intense oversight. This is vastly different in Finland, where the regulatory bodies find research more permissible in IVF excess, but only up to 14 days after fertilization. [48] Spain’s approach differs still, with a comprehensive regulatory framework. [49] Thus, research regulation can be culture-specific due to variations in applied principles. Diverse cultures call for various approaches to ethical permissibility. [50] Only an adaptive-deliberative model can address the cultural constructions of self and achieve positive, culturally sensitive stem cell research practices. [51]

II.     Religious Perspectives on ESC

Embryonic stem cell sources are the main consideration within religious contexts. While individuals may not regard their own religious texts as authoritative or factual, religion can shape their foundations or perspectives.

The Qur'an states:

“And indeed We created man from a quintessence of clay. Then We placed within him a small quantity of nutfa (sperm to fertilize) in a safe place. Then We have fashioned the nutfa into an ‘alaqa (clinging clot or cell cluster), then We developed the ‘alaqa into mudgha (a lump of flesh), and We made mudgha into bones, and clothed the bones with flesh, then We brought it into being as a new creation. So Blessed is Allah, the Best of Creators.” [52]

Many scholars of Islam estimate the time of soul installment, marked by the angel breathing in the soul to bring the individual into creation, as 120 days from conception. [53] Personhood begins at this point, and the value of life would prohibit research or experimentation that could harm the individual. If the fetus is more than 120 days old, the time ensoulment is interpreted to occur according to Islamic law, abortion is no longer permissible. [54] There are a few opposing opinions about early embryos in Islamic traditions. According to some Islamic theologians, there is no ensoulment of the early embryo, which is the source of stem cells for ESC research. [55]

In Buddhism, the stance on stem cell research is not settled. The main tenets, the prohibition against harming or destroying others (ahimsa) and the pursuit of knowledge (prajña) and compassion (karuna), leave Buddhist scholars and communities divided. [56] Some scholars argue stem cell research is in accordance with the Buddhist tenet of seeking knowledge and ending human suffering. Others feel it violates the principle of not harming others. Finding the balance between these two points relies on the karmic burden of Buddhist morality. In trying to prevent ahimsa towards the embryo, Buddhist scholars suggest that to comply with Buddhist tenets, research cannot be done as the embryo has personhood at the moment of conception and would reincarnate immediately, harming the individual's ability to build their karmic burden. [57] On the other hand, the Bodhisattvas, those considered to be on the path to enlightenment or Nirvana, have given organs and flesh to others to help alleviate grieving and to benefit all. [58] Acceptance varies on applied beliefs and interpretations.

Catholicism does not support embryonic stem cell research, as it entails creation or destruction of human embryos. This destruction conflicts with the belief in the sanctity of life. For example, in the Old Testament, Genesis describes humanity as being created in God’s image and multiplying on the Earth, referencing the sacred rights to human conception and the purpose of development and life. In the Ten Commandments, the tenet that one should not kill has numerous interpretations where killing could mean murder or shedding of the sanctity of life, demonstrating the high value of human personhood. In other books, the theological conception of when life begins is interpreted as in utero, [59] highlighting the inviolability of life and its formation in vivo to make a religious point for accepting such research as relatively limited, if at all. [60] The Vatican has released ethical directives to help apply a theological basis to modern-day conflicts. The Magisterium of the Church states that “unless there is a moral certainty of not causing harm,” experimentation on fetuses, fertilized cells, stem cells, or embryos constitutes a crime. [61] Such procedures would not respect the human person who exists at these stages, according to Catholicism. Damages to the embryo are considered gravely immoral and illicit. [62] Although the Catholic Church officially opposes abortion, surveys demonstrate that many Catholic people hold pro-choice views, whether due to the context of conception, stage of pregnancy, threat to the mother’s life, or for other reasons, demonstrating that practicing members can also accept some but not all tenets. [63]

Some major Jewish denominations, such as the Reform, Conservative, and Reconstructionist movements, are open to supporting ESC use or research as long as it is for saving a life. [64] Within Judaism, the Talmud, or study, gives personhood to the child at birth and emphasizes that life does not begin at conception: [65]

“If she is found pregnant, until the fortieth day it is mere fluid,” [66]

Whereas most religions prioritize the status of human embryos, the Halakah (Jewish religious law) states that to save one life, most other religious laws can be ignored because it is in pursuit of preservation. [67] Stem cell research is accepted due to application of these religious laws.

We recognize that all religions contain subsets and sects. The variety of environmental and cultural differences within religious groups requires further analysis to respect the flexibility of religious thoughts and practices. We make no presumptions that all cultures require notions of autonomy or morality as under the common morality theory , which asserts a set of universal moral norms that all individuals share provides moral reasoning and guides ethical decisions. [68] We only wish to show that the interaction with morality varies between cultures and countries.

III.     A Flexible Ethical Approach

The plurality of different moral approaches described above demonstrates that there can be no universally acceptable uniform law for ESC on a global scale. Instead of developing one standard, flexible ethical applications must be continued. We recommend local guidelines that incorporate important cultural and ethical priorities.

While the Declaration of Helsinki is more relevant to people in clinical trials receiving ESC products, in keeping with the tradition of protections for research subjects, consent of the donor is an ethical requirement for ESC donation in many jurisdictions including the US, Canada, and Europe. [69] The Declaration of Helsinki provides a reference point for regulatory standards and could potentially be used as a universal baseline for obtaining consent prior to gamete or embryo donation.

For instance, in Columbia University’s egg donor program for stem cell research, donors followed standard screening protocols and “underwent counseling sessions that included information as to the purpose of oocyte donation for research, what the oocytes would be used for, the risks and benefits of donation, and process of oocyte stimulation” to ensure transparency for consent. [70] The program helped advance stem cell research and provided clear and safe research methods with paid participants. Though paid participation or covering costs of incidental expenses may not be socially acceptable in every culture or context, [71] and creating embryos for ESC research is illegal in many jurisdictions, Columbia’s program was effective because of the clear and honest communications with donors, IRBs, and related stakeholders.  This example demonstrates that cultural acceptance of scientific research and of the idea that an egg or embryo does not have personhood is likely behind societal acceptance of donating eggs for ESC research. As noted, many countries do not permit the creation of embryos for research.

Proper communication and education regarding the process and purpose of stem cell research may bolster comprehension and garner more acceptance. “Given the sensitive subject material, a complete consent process can support voluntary participation through trust, understanding, and ethical norms from the cultures and morals participants value. This can be hard for researchers entering countries of different socioeconomic stability, with different languages and different societal values. [72]

An adequate moral foundation in medical ethics is derived from the cultural and religious basis that informs knowledge and actions. [73] Understanding local cultural and religious values and their impact on research could help researchers develop humility and promote inclusion.

IV.     Concerns

Some may argue that if researchers all adhere to one ethics standard, protection will be satisfied across all borders, and the global public will trust researchers. However, defining what needs to be protected and how to define such research standards is very specific to the people to which standards are applied. We suggest that applying one uniform guide cannot accurately protect each individual because we all possess our own perceptions and interpretations of social values. [74] Therefore, the issue of not adjusting to the moral pluralism between peoples in applying one standard of ethics can be resolved by building out ethics models that can be adapted to different cultures and religions.

Other concerns include medical tourism, which may promote health inequities. [75] Some countries may develop and approve products derived from ESC research before others, compromising research ethics or drug approval processes. There are also concerns about the sale of unauthorized stem cell treatments, for example, those without FDA approval in the United States. Countries with robust research infrastructures may be tempted to attract medical tourists, and some customers will have false hopes based on aggressive publicity of unproven treatments. [76]

For example, in China, stem cell clinics can market to foreign clients who are not protected under the regulatory regimes. Companies employ a marketing strategy of “ethically friendly” therapies. Specifically, in the case of Beike, China’s leading stem cell tourism company and sprouting network, ethical oversight of administrators or health bureaus at one site has “the unintended consequence of shifting questionable activities to another node in Beike's diffuse network.” [77] In contrast, Jordan is aware of stem cell research’s potential abuse and its own status as a “health-care hub.” Jordan’s expanded regulations include preserving the interests of individuals in clinical trials and banning private companies from ESC research to preserve transparency and the integrity of research practices. [78]

The social priorities of the community are also a concern. The ISSCR explicitly states that guidelines “should be periodically revised to accommodate scientific advances, new challenges, and evolving social priorities.” [79] The adaptable ethics model extends this consideration further by addressing whether research is warranted given the varying degrees of socioeconomic conditions, political stability, and healthcare accessibilities and limitations. An ethical approach would require discussion about resource allocation and appropriate distribution of funds. [80]

While some religions emphasize the sanctity of life from conception, which may lead to public opposition to ESC research, others encourage ESC research due to its potential for healing and alleviating human pain. Many countries have special regulations that balance local views on embryonic personhood, the benefits of research as individual or societal goods, and the protection of human research subjects. To foster understanding and constructive dialogue, global policy frameworks should prioritize the protection of universal human rights, transparency, and informed consent. In addition to these foundational global policies, we recommend tailoring local guidelines to reflect the diverse cultural and religious perspectives of the populations they govern. Ethics models should be adapted to local populations to effectively establish research protections, growth, and possibilities of stem cell research.

For example, in countries with strong beliefs in the moral sanctity of embryos or heavy religious restrictions, an adaptive model can allow for discussion instead of immediate rejection. In countries with limited individual rights and voice in science policy, an adaptive model ensures cultural, moral, and religious views are taken into consideration, thereby building social inclusion. While this ethical consideration by the government may not give a complete voice to every individual, it will help balance policies and maintain the diverse perspectives of those it affects. Embracing an adaptive ethics model of ESC research promotes open-minded dialogue and respect for the importance of human belief and tradition. By actively engaging with cultural and religious values, researchers can better handle disagreements and promote ethical research practices that benefit each society.

This brief exploration of the religious and cultural differences that impact ESC research reveals the nuances of relative ethics and highlights a need for local policymakers to apply a more intense adaptive model.

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[29] Wang, L., Wang, F., & Zhang, W. (2021). Bioethics in China’s biosecurity law: Forms, effects, and unsettled issues. Journal of law and the biosciences , 8(1).  https://doi.org/10.1093/jlb/lsab019 https://academic.oup.com/jlb/article/8/1/lsab019/6299199

[30] Chen, H., Wei, T., Wang, H.  et al.  Association of China’s two-child policy with changes in number of births and birth defects rate, 2008–2017.  BMC Public Health   22 , 434 (2022). https://doi.org/10.1186/s12889-022-12839-0

[31] Azuma, K. Regulatory Landscape of Regenerative Medicine in Japan.  Curr Stem Cell Rep   1 , 118–128 (2015). https://doi.org/10.1007/s40778-015-0012-6

[32] Harris, R. (2005, May 19). Researchers Report Advance in Stem Cell Production . NPR. https://www.npr.org/2005/05/19/4658967/researchers-report-advance-in-stem-cell-production

[33] Park, S. (2012). South Korea steps up stem-cell work.  Nature . https://doi.org/10.1038/nature.2012.10565

[34] Resnik, D. B., Shamoo, A. E., & Krimsky, S. (2006). Fraudulent human embryonic stem cell research in South Korea: lessons learned.  Accountability in research ,  13 (1), 101–109. https://doi.org/10.1080/08989620600634193 .

[35] Alahmad, G., Aljohani, S., & Najjar, M. F. (2020). Ethical challenges regarding the use of stem cells: interviews with researchers from Saudi Arabia. BMC medical ethics, 21(1), 35. https://doi.org/10.1186/s12910-020-00482-6

[36] Association for the Advancement of Blood and Biotherapies.  https://www.aabb.org/regulatory-and-advocacy/regulatory-affairs/regulatory-for-cellular-therapies/international-competent-authorities/saudi-arabia

[37] Alahmad, G., Aljohani, S., & Najjar, M. F. (2020). Ethical challenges regarding the use of stem cells: Interviews with researchers from Saudi Arabia.  BMC medical ethics ,  21 (1), 35. https://doi.org/10.1186/s12910-020-00482-6

[38] Alahmad, G., Aljohani, S., & Najjar, M. F. (2020). Ethical challenges regarding the use of stem cells: Interviews with researchers from Saudi Arabia. BMC medical ethics , 21(1), 35. https://doi.org/10.1186/s12910-020-00482-6

Culturally, autonomy practices follow a relational autonomy approach based on a paternalistic deontological health care model. The adherence to strict international research policies and religious pillars within the regulatory environment is a great foundation for research ethics. However, there is a need to develop locally targeted ethics approaches for research (as called for in Alahmad, G., Aljohani, S., & Najjar, M. F. (2020). Ethical challenges regarding the use of stem cells: interviews with researchers from Saudi Arabia. BMC medical ethics, 21(1), 35. https://doi.org/10.1186/s12910-020-00482-6), this decision-making approach may help advise a research decision model. For more on the clinical cultural autonomy approaches, see: Alabdullah, Y. Y., Alzaid, E., Alsaad, S., Alamri, T., Alolayan, S. W., Bah, S., & Aljoudi, A. S. (2022). Autonomy and paternalism in Shared decision‐making in a Saudi Arabian tertiary hospital: A cross‐sectional study. Developing World Bioethics , 23 (3), 260–268. https://doi.org/10.1111/dewb.12355 ; Bukhari, A. A. (2017). Universal Principles of Bioethics and Patient Rights in Saudi Arabia (Doctoral dissertation, Duquesne University). https://dsc.duq.edu/etd/124; Ladha, S., Nakshawani, S. A., Alzaidy, A., & Tarab, B. (2023, October 26). Islam and Bioethics: What We All Need to Know . Columbia University School of Professional Studies. https://sps.columbia.edu/events/islam-and-bioethics-what-we-all-need-know

[39] Ababneh, M. A., Al-Azzam, S. I., Alzoubi, K., Rababa’h, A., & Al Demour, S. (2021). Understanding and attitudes of the Jordanian public about clinical research ethics.  Research Ethics ,  17 (2), 228-241.  https://doi.org/10.1177/1747016120966779

[40] Ababneh, M. A., Al-Azzam, S. I., Alzoubi, K., Rababa’h, A., & Al Demour, S. (2021). Understanding and attitudes of the Jordanian public about clinical research ethics.  Research Ethics ,  17 (2), 228-241.  https://doi.org/10.1177/1747016120966779

[41] Dajani, R. (2014). Jordan’s stem-cell law can guide the Middle East.  Nature  510, 189. https://doi.org/10.1038/510189a

[42] Dajani, R. (2014). Jordan’s stem-cell law can guide the Middle East.  Nature  510, 189. https://doi.org/10.1038/510189a

[43] The EU’s definition of autonomy relates to the capacity for creating ideas, moral insight, decisions, and actions without constraint, personal responsibility, and informed consent. However, the EU views autonomy as not completely able to protect individuals and depends on other principles, such as dignity, which “expresses the intrinsic worth and fundamental equality of all human beings.” Rendtorff, J.D., Kemp, P. (2019). Four Ethical Principles in European Bioethics and Biolaw: Autonomy, Dignity, Integrity and Vulnerability. In: Valdés, E., Lecaros, J. (eds) Biolaw and Policy in the Twenty-First Century. International Library of Ethics, Law, and the New Medicine, vol 78. Springer, Cham. https://doi.org/10.1007/978-3-030-05903-3_3

[44] Council of Europe. Convention for the protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine (ETS No. 164) https://www.coe.int/en/web/conventions/full-list?module=treaty-detail&treatynum=164 (forbidding the creation of embryos for research purposes only, and suggests embryos in vitro have protections.); Also see Drabiak-Syed B. K. (2013). New President, New Human Embryonic Stem Cell Research Policy: Comparative International Perspectives and Embryonic Stem Cell Research Laws in France.  Biotechnology Law Report ,  32 (6), 349–356. https://doi.org/10.1089/blr.2013.9865

[45] Rendtorff, J.D., Kemp, P. (2019). Four Ethical Principles in European Bioethics and Biolaw: Autonomy, Dignity, Integrity and Vulnerability. In: Valdés, E., Lecaros, J. (eds) Biolaw and Policy in the Twenty-First Century. International Library of Ethics, Law, and the New Medicine, vol 78. Springer, Cham. https://doi.org/10.1007/978-3-030-05903-3_3

[46] Tomuschat, C., Currie, D. P., Kommers, D. P., & Kerr, R. (Trans.). (1949, May 23). Basic law for the Federal Republic of Germany. https://www.btg-bestellservice.de/pdf/80201000.pdf

[47] Regulation of Stem Cell Research in Germany . Eurostemcell. (2017, April 26). https://www.eurostemcell.org/regulation-stem-cell-research-germany

[48] Regulation of Stem Cell Research in Finland . Eurostemcell. (2017, April 26). https://www.eurostemcell.org/regulation-stem-cell-research-finland

[49] Regulation of Stem Cell Research in Spain . Eurostemcell. (2017, April 26). https://www.eurostemcell.org/regulation-stem-cell-research-spain

[50] Some sources to consider regarding ethics models or regulatory oversights of other cultures not covered:

Kara MA. Applicability of the principle of respect for autonomy: the perspective of Turkey. J Med Ethics. 2007 Nov;33(11):627-30. doi: 10.1136/jme.2006.017400. PMID: 17971462; PMCID: PMC2598110.

Ugarte, O. N., & Acioly, M. A. (2014). The principle of autonomy in Brazil: one needs to discuss it ...  Revista do Colegio Brasileiro de Cirurgioes ,  41 (5), 374–377. https://doi.org/10.1590/0100-69912014005013

Bharadwaj, A., & Glasner, P. E. (2012). Local cells, global science: The rise of embryonic stem cell research in India . Routledge.

For further research on specific European countries regarding ethical and regulatory framework, we recommend this database: Regulation of Stem Cell Research in Europe . Eurostemcell. (2017, April 26). https://www.eurostemcell.org/regulation-stem-cell-research-europe   

[51] Klitzman, R. (2006). Complications of culture in obtaining informed consent. The American Journal of Bioethics, 6(1), 20–21. https://doi.org/10.1080/15265160500394671 see also: Ekmekci, P. E., & Arda, B. (2017). Interculturalism and Informed Consent: Respecting Cultural Differences without Breaching Human Rights.  Cultura (Iasi, Romania) ,  14 (2), 159–172.; For why trust is important in research, see also: Gray, B., Hilder, J., Macdonald, L., Tester, R., Dowell, A., & Stubbe, M. (2017). Are research ethics guidelines culturally competent?  Research Ethics ,  13 (1), 23-41.  https://doi.org/10.1177/1747016116650235

[52] The Qur'an  (M. Khattab, Trans.). (1965). Al-Mu’minun, 23: 12-14. https://quran.com/23

[53] Lenfest, Y. (2017, December 8). Islam and the beginning of human life . Bill of Health. https://blog.petrieflom.law.harvard.edu/2017/12/08/islam-and-the-beginning-of-human-life/

[54] Aksoy, S. (2005). Making regulations and drawing up legislation in Islamic countries under conditions of uncertainty, with special reference to embryonic stem cell research. Journal of Medical Ethics , 31: 399-403.; see also: Mahmoud, Azza. "Islamic Bioethics: National Regulations and Guidelines of Human Stem Cell Research in the Muslim World." Master's thesis, Chapman University, 2022. https://doi.org/10.36837/ chapman.000386

[55] Rashid, R. (2022). When does Ensoulment occur in the Human Foetus. Journal of the British Islamic Medical Association , 12 (4). ISSN 2634 8071. https://www.jbima.com/wp-content/uploads/2023/01/2-Ethics-3_-Ensoulment_Rafaqat.pdf.

[56] Sivaraman, M. & Noor, S. (2017). Ethics of embryonic stem cell research according to Buddhist, Hindu, Catholic, and Islamic religions: perspective from Malaysia. Asian Biomedicine,8(1) 43-52.  https://doi.org/10.5372/1905-7415.0801.260

[57] Jafari, M., Elahi, F., Ozyurt, S. & Wrigley, T. (2007). 4. Religious Perspectives on Embryonic Stem Cell Research. In K. Monroe, R. Miller & J. Tobis (Ed.),  Fundamentals of the Stem Cell Debate: The Scientific, Religious, Ethical, and Political Issues  (pp. 79-94). Berkeley: University of California Press.  https://escholarship.org/content/qt9rj0k7s3/qt9rj0k7s3_noSplash_f9aca2e02c3777c7fb76ea768ba458f0.pdf https://doi.org/10.1525/9780520940994-005

[58] Lecso, P. A. (1991). The Bodhisattva Ideal and Organ Transplantation.  Journal of Religion and Health ,  30 (1), 35–41. http://www.jstor.org/stable/27510629 ; Bodhisattva, S. (n.d.). The Key of Becoming a Bodhisattva . A Guide to the Bodhisattva Way of Life. http://www.buddhism.org/Sutras/2/BodhisattvaWay.htm

[59] There is no explicit religious reference to when life begins or how to conduct research that interacts with the concept of life. However, these are relevant verses pertaining to how the fetus is viewed. (( King James Bible . (1999). Oxford University Press. (original work published 1769))

Jerimiah 1: 5 “Before I formed thee in the belly I knew thee; and before thou camest forth out of the womb I sanctified thee…”

In prophet Jerimiah’s insight, God set him apart as a person known before childbirth, a theme carried within the Psalm of David.

Psalm 139: 13-14 “…Thou hast covered me in my mother's womb. I will praise thee; for I am fearfully and wonderfully made…”

These verses demonstrate David’s respect for God as an entity that would know of all man’s thoughts and doings even before birth.

[60] It should be noted that abortion is not supported as well.

[61] The Vatican. (1987, February 22). Instruction on Respect for Human Life in Its Origin and on the Dignity of Procreation Replies to Certain Questions of the Day . Congregation For the Doctrine of the Faith. https://www.vatican.va/roman_curia/congregations/cfaith/documents/rc_con_cfaith_doc_19870222_respect-for-human-life_en.html

[62] The Vatican. (2000, August 25). Declaration On the Production and the Scientific and Therapeutic Use of Human Embryonic Stem Cells . Pontifical Academy for Life. https://www.vatican.va/roman_curia/pontifical_academies/acdlife/documents/rc_pa_acdlife_doc_20000824_cellule-staminali_en.html ; Ohara, N. (2003). Ethical Consideration of Experimentation Using Living Human Embryos: The Catholic Church’s Position on Human Embryonic Stem Cell Research and Human Cloning. Department of Obstetrics and Gynecology . Retrieved from https://article.imrpress.com/journal/CEOG/30/2-3/pii/2003018/77-81.pdf.

[63] Smith, G. A. (2022, May 23). Like Americans overall, Catholics vary in their abortion views, with regular mass attenders most opposed . Pew Research Center. https://www.pewresearch.org/short-reads/2022/05/23/like-americans-overall-catholics-vary-in-their-abortion-views-with-regular-mass-attenders-most-opposed/

[64] Rosner, F., & Reichman, E. (2002). Embryonic stem cell research in Jewish law. Journal of halacha and contemporary society , (43), 49–68.; Jafari, M., Elahi, F., Ozyurt, S. & Wrigley, T. (2007). 4. Religious Perspectives on Embryonic Stem Cell Research. In K. Monroe, R. Miller & J. Tobis (Ed.),  Fundamentals of the Stem Cell Debate: The Scientific, Religious, Ethical, and Political Issues  (pp. 79-94). Berkeley: University of California Press.  https://escholarship.org/content/qt9rj0k7s3/qt9rj0k7s3_noSplash_f9aca2e02c3777c7fb76ea768ba458f0.pdf https://doi.org/10.1525/9780520940994-005

[65] Schenker J. G. (2008). The beginning of human life: status of embryo. Perspectives in Halakha (Jewish Religious Law).  Journal of assisted reproduction and genetics ,  25 (6), 271–276. https://doi.org/10.1007/s10815-008-9221-6

[66] Ruttenberg, D. (2020, May 5). The Torah of Abortion Justice (annotated source sheet) . Sefaria. https://www.sefaria.org/sheets/234926.7?lang=bi&with=all&lang2=en

[67] Jafari, M., Elahi, F., Ozyurt, S. & Wrigley, T. (2007). 4. Religious Perspectives on Embryonic Stem Cell Research. In K. Monroe, R. Miller & J. Tobis (Ed.),  Fundamentals of the Stem Cell Debate: The Scientific, Religious, Ethical, and Political Issues  (pp. 79-94). Berkeley: University of California Press.  https://escholarship.org/content/qt9rj0k7s3/qt9rj0k7s3_noSplash_f9aca2e02c3777c7fb76ea768ba458f0.pdf https://doi.org/10.1525/9780520940994-005

[68] Gert, B. (2007). Common morality: Deciding what to do . Oxford Univ. Press.

[69] World Medical Association (2013). World Medical Association Declaration of Helsinki: ethical principles for medical research involving human subjects. JAMA , 310(20), 2191–2194. https://doi.org/10.1001/jama.2013.281053 Declaration of Helsinki – WMA – The World Medical Association .; see also: National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. (1979).  The Belmont report: Ethical principles and guidelines for the protection of human subjects of research . U.S. Department of Health and Human Services.  https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/read-the-belmont-report/index.html

[70] Zakarin Safier, L., Gumer, A., Kline, M., Egli, D., & Sauer, M. V. (2018). Compensating human subjects providing oocytes for stem cell research: 9-year experience and outcomes.  Journal of assisted reproduction and genetics ,  35 (7), 1219–1225. https://doi.org/10.1007/s10815-018-1171-z https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6063839/ see also: Riordan, N. H., & Paz Rodríguez, J. (2021). Addressing concerns regarding associated costs, transparency, and integrity of research in recent stem cell trial. Stem Cells Translational Medicine , 10 (12), 1715–1716. https://doi.org/10.1002/sctm.21-0234

[71] Klitzman, R., & Sauer, M. V. (2009). Payment of egg donors in stem cell research in the USA.  Reproductive biomedicine online ,  18 (5), 603–608. https://doi.org/10.1016/s1472-6483(10)60002-8

[72] Krosin, M. T., Klitzman, R., Levin, B., Cheng, J., & Ranney, M. L. (2006). Problems in comprehension of informed consent in rural and peri-urban Mali, West Africa.  Clinical trials (London, England) ,  3 (3), 306–313. https://doi.org/10.1191/1740774506cn150oa

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[74] Msoroka, M. S., & Amundsen, D. (2018). One size fits not quite all: Universal research ethics with diversity.  Research Ethics ,  14 (3), 1-17.  https://doi.org/10.1177/1747016117739939

[75] Pirzada, N. (2022). The Expansion of Turkey’s Medical Tourism Industry.  Voices in Bioethics ,  8 . https://doi.org/10.52214/vib.v8i.9894

[76] Stem Cell Tourism: False Hope for Real Money . Harvard Stem Cell Institute (HSCI). (2023). https://hsci.harvard.edu/stem-cell-tourism , See also: Bissassar, M. (2017). Transnational Stem Cell Tourism: An ethical analysis.  Voices in Bioethics ,  3 . https://doi.org/10.7916/vib.v3i.6027

[77] Song, P. (2011) The proliferation of stem cell therapies in post-Mao China: problematizing ethical regulation,  New Genetics and Society , 30:2, 141-153, DOI:  10.1080/14636778.2011.574375

[78] Dajani, R. (2014). Jordan’s stem-cell law can guide the Middle East.  Nature  510, 189. https://doi.org/10.1038/510189a

[79] International Society for Stem Cell Research. (2024). Standards in stem cell research . International Society for Stem Cell Research. https://www.isscr.org/guidelines/5-standards-in-stem-cell-research

[80] Benjamin, R. (2013). People’s science bodies and rights on the Stem Cell Frontier . Stanford University Press.

Mifrah Hayath

SM Candidate Harvard Medical School, MS Biotechnology Johns Hopkins University

Olivia Bowers

MS Bioethics Columbia University (Disclosure: affiliated with Voices in Bioethics)

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