The earthquakes which struck Nepal’s capital in 2015 were humanitarian disasters. Not only did they inflict tragic loss of life and livelihoods, they also destroyed parts of the Kathmandu Valley’s unique UNESCO World Heritage site. These monuments were not just ornate structures but living monuments playing central roles in the daily lives of thousands, representing portals where the heavens touch earth and people commune with guiding deities. Their rehabilitation was also of economic importance as they represent a major source of (...) tourist income and employment. Unfortunately, the social and political desire for rapid reconstruction resulted in the swift removal of many traditionally constructed foundations and their replacement with modern materials without assessments of whether they contributed towards the collapse of individual monuments. These actions, combined with the wholesale removal, mixing and dumping of modern and historic debris, contributed to a second, equally destructive, cultural catastrophe – irreversible damage to Kathmandu’s Medieval fabric, in a process which frequently excluded local communities and custodians. This case study draws from our collective reflections and lessons learned from our attempts to enable equitable and ethical research partnerships between UK and Nepali colleagues as well as local communities in the debris of the Kasthamandap, Kathmandu’s eponymous monument. After briefly describing the potential of mobilising archaeologists in post-disaster contexts and outlining the challenges of undertaking research in such a setting, our case study utilises the TRUST Code to assess the character and success of our multidisciplinary collaboration in a time of crises. (shrink)

This open access book offers insights into the development of the ground-breaking Global Code of Conduct for Research in Resource-Poor Settings (GCC) and the San Code of Research Ethics. Using a new, intuitive moral framework predicated on fairness, respect, care and honesty, both codes target ethics dumping – the export of unethical research practices from a high-income setting to a lower- or middle-income setting. The book is a rich resource of information and argument for any research (...) stakeholder who opposes double standards in research. It will be indispensable for applicants to European Union framework programmes, as the GCC is now a mandatory reference document for EU funding. (shrink)

Community-researcher partnerships constitute one of the most important recent developments in biomedical ethics. The partnerships protect vulnerable communities within which research is conducted and help ensure that the communities benefit from the research. At the same time, they embody deep, core values about the social nature of persons and the value of community that significantly modify the radical individualism too often associated with the prevailing concepts of autonomy and respect for persons. This article examines the burgeoning (...) literature on community-researcher partnerships to identify the main ways of thinking ethically about the obligations of investigators and the roles and rights of communities in scientific research. The paper helps to uncover the deep commonalities and differences that mark the current debate in this emerging arena of research ethics, a debate over the social nature of persons that is beginning to influence the understanding of other bioethical issues. (shrink)

New Labour's approach to partnership working in the United Kingdom has emphasized a technical rationalist approach to achieving partnership between social work and its partner agencies. While endeavoring to provide an organizational environment in which partnership can be successful, less focus has been given to addressing differences in professional cultures that are crucial for ensuring successful partnership working. This article argues for the importance of considering different professional identities, values and ethics within partnership arrangements. The developing research literature will (...) be investigated to show how the absence of a serious engagement with different professional identities has hampered successful partnership working. It will suggest that by drawing on the work of Jürgen Habermas and his theory of communicative action that different professional identities can begin to be reconciled. It does not suggest that Habermas's approach is unproblematic and considers the critique of communicative action and its emphasis upon building consensus by Seyla Benhabib. What the article suggests is that communicative action and the ethics that underpin it point toward a possibility for ethical communication between different professional groups. (shrink)

Over the past two decades, the promotion of collaborative partnerships involving researchers from low and middle income countries with those from high income countries has been a major development in global health research. Ideally, these partnerships would lead to more equitable collaboration including the sharing of research responsibilities and rewards. While collaborative partnership initiatives have shown promise and attracted growing interest, there has been little scholarly debate regarding the fair distribution of authorship credit within these (...) partnerships. (shrink)

Global health research partnerships have many benefits, including the development of research capacity and improving the production and use of evidence to improve global health equity. These partnerships also include many challenges, with power and resource differences often leading to inequitable and unethical partnership dynamics. Responding to these challenges and to important gaps in partnership scholarship, the Canadian Coalition for Global Health Research conducted a three-year, multi-regional consultation to capture the research partnership experiences of (...) stakeholders in South Asia, Latin America, and sub-Saharan Africa. The consultation participants described persistent inequities in the conduct of global health research partnerships and called for a mechanism through which to improve accountability for ethical conduct within partnerships. They also called for a commitment by the global health research community to research partnership ethics. The Partnership Assessment Toolkit is a practical tool that enables partners to openly discuss the ethics of their partnership and to put in place structures that create ethical accountability. Clear mechanisms such as the PAT are essential to guide ethical conduct to ensure that global health research partnerships are beneficial to all collaborators, that they reflect the values of the global health endeavor more broadly, and that they ultimately lead to improvements in health outcomes and health equity. (shrink)

Ethical challenges in genomic epidemiology are the direct result of novel tools used to confront scientific challenges in the field. An orders-of-magnitude increase in scale of genetic data collection has created the need for establishing diffuse international partnerships, sometimes across developed- and developing-world countries, with ramifications for assigning research ownership, distributing intellectual property rights, and encouraging capacity-building. Meanwhile, the fact that genomic epidemiological research is so far upstream in the pipeline of therapy development has implications for (...) the privacy rights of research participants and for a rigorous definition of valid informed consent, particularly in resource-poor settings. From these scientific underpinnings, we distill out two main categories of ethical issues: (1) How should researchers ensure that the subjects of research are appropriately protected? and (2) What is the structure of an equitable and fair system for distributing the financial and scientific rewards of research? We attempt to delineate the contours of specific problems in each category and propose steps toward solutions with reference to a particular project, known as gMap.net, that focuses on genomic epidemiological studies of malaria. (shrink)

Writing reflects some of the different characteristics of the language being used and of the people who are communicating. The present paper focusses on the internal written communication in international and inter-disciplinary research projects. Using a case study of an international public health research project, it argues that the authorship and the languages used in internal project communication are not neutral but help to generate or reinforce power hierarchies. Within research partnerships, language thus raises ethical (...) issues that have so far been neglected. Current ethics guidelines often focus on interactions between scientists and participants of social research and clinical trials, with less attention paid to the interactions among the scientists themselves. Describing all the different project phases based on writing within a research project, the paper distinguishes different influences on the distribution of power that emerge through a focus on written communication. The focus of the present paper is to illuminate the issues of ethics, power and the dimensions of hierarchy, physical location and native versus non-native English speakers that arise from paying attention to such communications. (shrink)

Background The global migration of nurses from resource-constrained to affluent nations raises complex ethical concerns, often rooted in historical power imbalances and neocolonial legacies. The Nepal-UK Memorandum of Understanding (MoU) on nurse recruitment, while presented as a solution to workforce shortages, exemplifies this complex dynamic, prompting critical questions about its implications for individual nurses and the healthcare systems involved. Aim This qualitative study explored the ethical complexities and dilemmas associated with the Nepal-UK nurse recruitment Memorandum of Understanding (MoU). (...) This bilateral agreement has sparked debate about its potential impact on both individual nurses and the healthcare systems of Nepal and the UK. Research Design A qualitative exploratory design utilizing semi-structured interviews was employed. Data were analyzed using reflexive thematic analysis. Participants and Research Context Twelve Nepali nurses from two private hospitals in Kathmandu, Nepal, participated in the study. Ethical Considerations The study was approved by the Nepal Health Research Council. All participants provided informed consent and were assured of confidentiality and anonymity. Results Four themes emerged from the data: (1) The lingering legacy of colonialism casts a shadow on the Nepal-UK relationship, raising concerns about potential exploitation and unequal power dynamics. (2) Nepali nurses grapple with the ethical dilemmas of pursuing personal dreams while acknowledging their responsibilities towards their communities and Nepal’s healthcare system. (3) The MoU’s claims of ethical recruitment are scrutinized, with nurses questioning its fairness and sustainability. (4) The agreement is challenged as a potential band-aid solution that may perpetuate global health inequities rather than fostering a genuine partnership. Conclusions The Nepal-UK MoU, while offering opportunities for individual nurses, also raises alarms about brain drain, exploitation, and the perpetuation of global health disparities. The study underscores the urgent need for a paradigm shift in international nurse recruitment practices, prioritizing genuine partnership, equitable distribution of benefits, and sustainable solutions that address the root causes of healthcare workforce challenges in both source and destination countries. (shrink)

This study assessed the relationship between ethical reasoning and the decision to grant equitable relief using an innocent spouse vignette where a wife had partial knowledge of her husband''s tax fraud. A path model derived from various ethics theories was tested using a sample of 357 accounting, legal, and human resource professionals, and after careful examination of the measurement and structural relationships in the path model, the results provided partial support for the study''s hypotheses. Moral intensity was marginally (...) associated with an increased recognition of an ethical issue and positively related ethical judgments made in an innocent spouse situation, and moral intensity was also negatively related to the decision to grant relief. The ethical judgment variable was positively related to the decision to grant relief, while ethical issue awareness was marginally associated with the decision to deny relief. The implications of these findings are discussed, along with the limitations of the study and suggestions for future research. (shrink)

The stock market crash of 1987 had a profound effect on corporate Australia and the Australian community in general. The fall-out revealed that some of our most respected business figures had not been as ethical, or even as lawful, as we would have hoped. This impropriety produced in Australia an awakening to business ethics. Whilst many companies endeavoured to introduce ethical practices into their corporations, they perceived ethics as a way of minimising damage to the corporation and in (...) some cases as a means of competitive advantage. What was lost was the reason that one should embark on business ethics; and that is to make the society and corporate Australia a more ethical place in which to exist.This paper proposes a model based on 2 factors: commitment and partnerships, as a means of enabling corporate Australia to refocus attention on the main purpose of being inherently ethical in all that we do. This ethical model requires a commitment to partnerships with all stakeholders both internal and external in an attempt to enhance the level of ethical business practices that are contemplated and pursued within corporate Australia. Whilst the research agenda and the information collected is Australian-based, it is hoped that the ideas contained within this paper will have a wider appeal to corporations in similar cultural settings. (shrink)

Science and technology, as rational approaches to problem solving, are driving forces in the promotion of democracy at home and abroad. Science based decision-making is increasingly global as countries share technology, research results, and engage in joint studies on common problems. The widening rift between global wealth and poverty diminishes for many the opportunity for exposure to science, technology and social science based decision-making on issues that directly affect them. This paper outlines a model for democratizing science by utilizing (...) the interactive tools of the social sciences in a process that enables information-marginalized people to engage with the language, methods and results of social science for purposes of community empowerment and voice in science policy. The paper offers examples of approaches to implementation, citing various forms of research partnerships with communities, and discusses challenges including ethical considerations, the conflict between “local” and science-based knowledges and power differentials in practice. (shrink)

The existing model for ethical review of medical research consists primarily of regulations designed to prevent exploitation of participants. This model may fail when reviewing other ethical obligations, particularly the responsibility to provide valuable knowledge to society. Such failure is most apparent in developing countries, in which many stakeholders lack incentives or power to uphold society’s interests. An alternative ethical model is that of partnership, which actively involves all partners during ethical review and aims to (...) secure partners’ best interests through compromise. Unlike the existing “regulatory” model, the partnership model effectively addresses ethical obligations to provide positive benefits to society. For the partnership model to be effective, power must be shared among partners; thus, the partnership model can be harmonised with the “regulatory” model through explicit consideration of power structures. One opportunity for crafting power balance in developing countries is apparent in “implementation trials”—randomised trials motivated by and integrated into the implementation of long term public health interventions. Given the failings of the existing ethical review model, alternative models—for example, partnership—and means to balance power—for example, implementation trials—must be explored to ensure that medical research provides knowledge of value to societies in the developing world. (shrink)

“Big ticket” items in medicine pose a moral puzzle. We can call it the “Coby Howard puzzle,” after the boy whose need for an expensive bone marrow transplant forced Oregonians to reassess their policy of prohibiting this and other expensive “big ticket” procedures in favor of more low-tech, apparently cost-efficient interventions. The Oregon rationing debate was stimulated by the concern that expenditures on “big ticket” medical treatments for life-threatening disease were coming at the expense of low-tech, preventive “basic” care like (...) immunizations, wellbaby clinics, and prenatal care.Another recent example was the public controversy over expenditures of over $1,800 per day on a project to try to separate Siamese twins conjoined at the heart. The physicians, prior to the procedure, claimed there was a one percent chance of success. It was reported that 50,000 children in Philadelphia could be immunized at the cost of that innovative therapy. Cost-benefit analysis suggests that much greater good would be done in the long run if we ignored the expensive, long-shot, high-risk projects and focused on basic medical needs. (shrink)

Recruitment challenges in clinical research are widespread, particularly for traditionally under-represented groups. Referral relationships—in which research partners and clinical partners agree to collaborate on selected research studies or programmes, with the expectation that the clinical partners refer appropriate patients as potential participants—may help alleviate these challenges. Referral relationships allow research partners access to expanded and more diverse pools of participants by increasing the engagement of medical providers, leveraging providers’ connections with patients and providing structural support for (...) study participation. Clinical partners can also benefit from the resources offered by research involvement, and patients may benefit from improved access to studies. Yet despite their potential, referral relationships can raise ethical concerns. Here, we discuss ethical considerations for referral relationships in clinical research to address these concerns. When establishing relationships, fair participant selection should guide the sites and studies involved. When defining the terms of a relationship, partners should build trust and respect, collaborating so that health centres or hospitals and communities benefit from their research involvement with the mitigation of associated burdens. When implemented, referral relationships should continue to honour fair participant selection, reduce misunderstanding or miscommunication about research and protect patients’ privacy and confidentiality. Overall, when conducted ethically, referral relationships can help address study recruitment challenges and promote fair access to research opportunities. (shrink)

Data access and data sharing are vital to advance medicine. A growing number of public private partnerships are set up to facilitate data access and sharing, as private and public actors possess highly complementary health data sets and treatment development resources. However, the priorities and incentives of public and private organizations are frequently in conflict. This has complicated partnerships and sparked public concerns around ethical issues such as trust, justice or privacy—in turn raising an important problem in (...) business and data ethics: how can ethical theory inform the practice of public and private partners to mitigate misaligned incentives, and ensure that they can deliver societally beneficial innovation? In this paper, we report on the development of the Swiss Personalized Health Network’s ethical guidelines for health data sharing in public private partnerships. We describe the process of identifying ethical issues and engaging core stakeholders to incorporate their practical reality on these issues. Our report highlights core ethical issues in health data public private partnerships and provides strategies for how to overcome these in the Swiss health data context. By agreeing on and formalizing ethical principles and practices at the beginning of a partnership, partners and society can benefit from a relationship built around a mutual commitment to ethical principles. We present this summary in the hope that it will contribute to the global data sharing dialogue. (shrink)

Researchers and others involved in the research enterprise from 12 African countries met with those working in ethics and oversight in the United States as part of an effort to develop research ethics capacity. Drawing on a wealth of experience among participants, discussions at the meeting revealed five categories of issues that warrant careful attention by those engaged in similar efforts as well as international policymakers and those charged with oversight of research. (1) Principal investigators should build (...) ‘true research teams’ where members of the team are meaningfully involved in decisions regarding the protocol and its implementation. (2)There should be explicit discussion about the ‘standard of care’ at the outset of project planning that includes clarification of the terminology that is being used. (3) While internationally collaborative research may involve populations that have inherent vulnerabilities, it is important to recognize the limitations of host country solutions (such as elaborated consent processes) and look for means to negotiate appropriate protections for those willing to participate. (4) In conducting research involving biological materials it would be prudent to develop material transfer agreements at the outset of the study to clarify expectations and to minimize the likelihood of harm. (5) Those engaged in internationally collaborative research need to be alert to the potential conflicts of interests of host country ethics committees during the approval process and to take measures to manage them if they indeed exist. (shrink)

This study adopts a narrative lens to investigate how place shapes the emergence and work of cross-sector partnerships (CSPs). Based on a qualitative inquiry of the marketization of Lapland, Finland, as the home of Santa Claus, four matters of concern around the ethicality of marketizing Lapland are followed: revitalization, commerciality, distortion, and imbalance. The findings show how CSPs emerge in the marketization of place through the mechanisms of narrative contestations and misalignment of marketized place and place-identity, and their (re)alignment (...) at the nexus of marketization. The contestations and misalignment generate matters of concern from place, which in turn mobilize CSPs via two interrelated narrative practices: (i) problematizing and (ii) reimagining the marketized place to realign it with place-identity. The paper contributes the construct of concerned partnerships to the literature of CSPs, a place-based form of CSPs which consist of both market and non-market actors, including the place and its social and material resources. They are formed through matters of concern that emerge through misalignments of marketized place and place-identity, to realign them and sustain a place at a nexus of marketization. (shrink)

Background: Despite an increase in health research conducted in Africa, there are still inadequate human resources with research ethics training and lack of local long-term training opportunities in research ethics. A research ethics training program named United States-Mali Research Ethics Training Program (US-Mali RETP) was established through a partnership between the George Washington University Milken Institute School of Public Health (GWSPH), USA and University of Sciences, Techniques & Technologies of Bamako (USTTB), to address the critical (...) need for improved bioethics training, leadership, and policy in Mali. Methods: The aims of the capacity building programme are achieved by leveraging US and Africa-based expertise to strengthen research ethics education and capacity through: (1) intensive faculty development to design ethics training curricula; (2) development of a research ethics specialization within the existing Masters of Public Health program (MPH); and (3) establishing professional development courses through short-term training workshops and webinars to address research and professional needs in ethics. Results: The program will strengthen USTTB’s capacity of research ethics by training at least 15 MPH students over 5 years to prepare the next generation of ethics researchers. During the first two years of the program, a new ethics training curricula was developed, two cohorts of Master’s students were enrolled, and a series of webinars and workshops were conducted with participation of Malian and international researchers. Conclusions: US-Mali RETP will promote a sustainable bioethics enterprise at USTTB, and enable dissemination of research ethics training to increase health research capacity in Mali. (shrink)

Recent developments between Gasunie and Groningen illustrate the delicate issues which are raised by such company‐city partnerships. The author is a scientific researcher in Ethics at Nijenrode, The Netherlands School of Business. He wishes to thank Henk Pohlmann, Head of the department of Collective Relations and Social Policy of Gasunie, for information and discussion.

Drawing on a longitudinal case study of a 10‐year cross‐sector partnership for development in Colombia, this paper makes three contributions to current discussions on new collaborative governance approaches in which business, non‐governmental organizations and development agencies jointly address development challenges. First, our study explores how partnerships can be successful in achieving longer term development while being designed as short‐term governance arrangements. Second, we shed light on how power asymmetries can shape partnership governance. Many studies have highlighted the negative aspects (...) of donor involvement in cross‐sector partnerships. We identify, however, that an interplay of formal and informal governance in partnerships can provide a positive enabling framework for partner relationships to grow and mature. Third, the case highlights that the studied partnership employed governance mechanisms that facilitate local ownership and empower small‐scale farmers, which effected (longer term) value chain relationships. In this regard, our case study helps to understand governance processes and conditions under which transformative local partnerships can emerge and sustain in post‐conflict settings. The paper adds observations on the collaborative governance content that is required for a more integrative research approach to corporate contributions to development. (shrink)

Based on a qualitative study of Copenhagen 2021 WorldPride, this article explores collaboration between the local organiser and its corporate partners, focusing on the tensions involved in this collaboration, which emerge from and uphold relations between the extremes of unethical pinkwashing, on the one hand, and ethical purity, on the other. Here, pinkwashing is understood as a looming risk, and purity as an unrealizable ideal. As such, corporate sponsorships of Pride are conceptualized as inherently impure—and productive because of their (...) very impurity rather than despite it. Analytically, we identify and explore three productive tensions where the first involves emergent normativities for what constitutes good, right, or proper corporate engagement in Pride, the second revolves around queer(ed) practices and products that open normativities, and the third centres on the role of internal LGBTI+ employee-driven networks whose activism pushes organisations to become further involved in Pride, developing aspirational solidarity. Reading across literatures on corporate activism and queer organisation, we introduce Alexis Shotwell’s notion of constitutive impurity to suggest that the potential for ethical corporate Pride partnerships arises when accepting the risk of pinkwashing rather than seeking to overcome it. (shrink)

BackgroundThe COVID-19 pandemic presents significant challenges to research ethics committees (RECs) in balancing urgency of review of COVID-19 research with careful consideration of risks and benefits. In the African context, RECs are further challenged by historical mistrust of research and potential impacts on COVID-19 related research participation, as well as the need to facilitate equitable access to effective treatments or vaccines for COVID-19. In South Africa, an absent National Health Research Ethics Council (NHREC) also (...) left RECs without national guidance for a significant duration of the COVID-19 pandemic. We conducted a qualitative descriptive study that explored the perspectives and experiences of RECs regarding the ethical challenges of COVID-19 research in South Africa.MethodsWe conducted in-depth interviews with 21 REC chairpersons or members from seven RECs at large academic health institutions across South Africa that were actively involved in the review of COVID-19 related research from January to April 2021. In-depth interviews were conducted remotely via Zoom. Interviews (60–125 min) were conducted in English using an in-depth interview guide, until data saturation was achieved. Audio-recordings were transcribed verbatim and field notes were converted into data documents. Line-by-line coding of transcripts was performed, and data were organised into themes and sub-themes. An inductive approach to thematic analysis was used to analyse data.ResultsFive main themes were identified, namely: rapidly evolving research ethics landscape, extreme vulnerability of research participants, unique challenges to informed consent, challenges to community engagement during COVID-19, and overlapping research ethics and public health equity issues. Sub-themes were identified for each main theme.ConclusionsNumerous, significant ethical complexities and challenges were identified by South African REC members in the review of COVID-19 related research. While RECs are resilient and adaptable, reviewer and REC member fatigue were major concerns. The numerous ethical issues identified also highlight the need for research ethics teaching and training, especially in informed consent, as well as the urgent requirement for the development of national guidelines for research ethics during public health emergencies. Further, comparative analysis between different countries is needed to develop the discourse around African RECs and COVID-19 research ethics issues. (shrink)

Although scientific and commercial excitement about genomic biobanks has subsided since the biotech bust in 2000, they continue to fascinate life scientists, bioethicists, and politicians alike. Indeed, these assemblages of personal health information, human DNA, and heterogeneous capital have become and remain important events in the ethics and politics of the life sciences. For starters, they continue to reveal and produce the central scientific, technological, and economic paradigms so ascendant in biology today: genome, infotech, and market. Biobanks also illustrate what (...) might be called the new distributive politics of biomedical research. Within those politics, the commodification of persons – or at the very least, of their informational representations – has challenged the ontological, ethical, and political underpinnings of the social contract between researchers and their human research subjects. In brief, biobanks are unsettling relations between genes, tissue, medical records, and persons. But it is also clear that these relations are increasingly being restructured by new rights of control, access, exclusion, and use known as “property,” both material and intellectual. (shrink)

Records the papers and commentaries, with an edited discussion, presented at an international consultation convened by the Council for International Organizations of Medical Sciences (CIOMS) to guide revision of the CIOMS International Ethical Guidelines for Biomedical Research Involving Human Subjects. The Guidelines, first issued in 1982 and then revised in 1993, are being updated and expanded to address a number of new and especially challenging ethical issues. These include issues raised by international collaborative trials of drugs in (...) developing countries, especially expensive drugs, and the use of placebo controls in randomized clinical trials. Others arise from the complexity of research in human genetics, including stem-cell research, and in reproductive biology. Throughout, particular attention is given to the difficult questions that arose during the heated debate over trials in developing countries, of short-duration zidovudine (AZT) therapy to reduce perinatal transmission of HIV. The International Ethical Guidelines for Biomedical Research Involving Human Subjects set out a code of research ethics that is widely used by ethical review committees and other bodies responsible for reviewing and overseeing the ethical design of studies and conduct of research. The revision of the Guidelines is being coordinated by CIOMS, in collaboration with WHO. The consultation centered on seven specially commissioned papers, authored by international experts that explore some of the more difficult issues in depth. Each is followed by an invited commentary, often expressing opposing views, and a summary of the issues or conclusions that emerged during the subsequent debate. The first paper, on justice in international research, deals with the question of whether proposals for research to be conducted in a developing country should make provision for future access of the population involved to the interventions under investigation. Also considered are questions that arise when research uses populations in developing countries to investigate interventions that will be of exclusive benefit to the industrialized world. Case studies of recent drug trials and their research protocols are discussed to illustrate circumstances in which use of populations in developing countries is justified or constitutes exploitation. Ethical challenges of the randomized controlled trial are considered in the second paper, which includes a discussion on the equitable distribution of benefits and risks, the use of placebo for controls, and the obligation to ensure that the participation of controls does not compromise their medical care or endanger their health. A paper on informed consent in international health research considers how cultural factors influence communication and language in the informed-consent process and respect for privacy and confidentiality in the research. Subsequent papers address issues in genetics research and reproductive biology, including the moral status of fetuses and the use of embryos in research, and examine the contribution which international human rights instruments can make in the application of the general principles of ethics to research involving human subjects. The final paper gives an overview of capacity building and the role of communities in international biomedical research. (shrink)

Cross-sector social partnerships are often studied from a macro and meso perspective, also in an attempt to assess effectiveness and societal impact. This article pays specific attention to the micro perspective, i.e. individual interactions between and within organizations related to partnerships that address the 'social good'. By focusing on the potential effects and mechanisms at the level of individuals and the organization(s) with which they interact, it aims to help fill a gap in research on partnerships, (...) including more insight into the process of interaction. We conceptually explore micro level interactions, and how partnership effects may 'trickle down' (e.g. from management to employees), or 'trickle up' (from employees to management) or 'trickle round' (e.g. between employees). Based on the literature from various disciplines, we discuss how more generic theories on social exchange and contagion, social learning and attraction-selection-attrition can help shed light on micro level interactions in a partnership, considering in particular transmission mechanisms via employees, top and middle management, and customers. In this way, partnerships can have wider benefits, as individuals have multiple roles and effects at the micro level can spread to the meso and macro levels as well. Implications for research and practice are outlined. (shrink)

The proliferation of public–private partnerships for development as an answer to many public challenges calls for careful evaluation. To this end, tailored frameworks are fundamental for helping understand the PPPs’ impact and for guiding corrective adjustment. Scholars have developed frameworks focusing on the partners’ relationships, the order of effects, and the distinction between outputs and outcomes. To capture a PPP’s complexity and multiple linkages with its environment, we argue that a thorough evaluation should adopt a stakeholder-oriented approach and consider (...) the costs and benefits that a PPP implies for them—especially as taxpayers’ money is involved. For this purpose, we build on a stakeholder-oriented evaluation framework from the nonprofit business partnership literature. In line with our broad evaluation conception, we extend it with the manifold ripple effects that PPPs for development have and include the time dimension for the links between different PPP stages and related outcomes to become clearer. Applying this framework to an illustrative case, we highlight important direct and especially indirect stakeholder outcomes, which a narrow evaluation would omit, point to the challenges involved in the evaluation endeavor, and identify interesting future research areas. (shrink)

Unmet legal needs contribute to housing, income, and food insecurity, along with other conditions that harm health and drive health inequity. Addressing health injustice requires new tools for the next generations of lawyers, doctors, and other healthcare professionals. An interprofessional group of co-authors argue that law and medical schools and other university partners should develop and cultivate Academic Medical-Legal Partnerships (A-MLPs), which are uniquely positioned to leverage service, education, and research resources, to advance health justice.

The views of parents and staff about physical and symbolic space and its effects on ethical clinical practice are reported. Researchers observed four neonatal intensive care units (NICUs) in southern England, and interviewed 40 senior staff and the parents of 80 babies. The adults' concerns include: how space affects the sharing of information and responsibility for the babies; respect and welcoming policies; access, freedom of movement and accessibility of staff; family friendly space and privacy; aesthetic values; and 'baby-led' space. (...) The paper concludes that abstract principles of respect for autonomy and attitudes towards the baby's biological and personal space take on practical embodied meanings in clinical spaces and practices. NICU design and aesthetics convey powerful ethical messages of welcome or exclusion that endorse or undermine partnerships between staff and parents. Helping premature and impaired babies to reach their space at the centre of their family involves sensitive management. (shrink)

Background Q-CEP (Qualificação dos Comitês de Ética em Pesquisa que compõem o Sistema CEP/Conep) is a nationwide project resulting from a partnership between the Brazilian National Research Ethics Commission (Conep), the Ministry of Health and Hospital Moinhos de Vento (HMV). It was developed to consolidate policy for ethical review of research with human beings in all members of the CEP/Conep System, Brazil’s national system of institutional review boards. The aim of this study was therefore to report on (...) the experience and results of the Q-CEP project. Methods An observational, retrospective study includes data from the Q-CEP, obtained from visits to all the institutional research ethics committees (RECs) in the country. The actions implemented by Q-CEP were part of a two-step process: (i) training visits to each REC; (ii) development of distance learning modules on strategic topics pertaining to research ethics evaluation. The data presented herein cover step one (training visits), defined by Q-CEP as the diagnostic stage of the project. For a country with social and economics inequalities such as Brazil, this is a particularly important stage; an accurate picture of reality is needed to inform planning of quality improvement strategies. Results In 2019–2021, Q-CEP visited 832 RECs and trained 11,197 people. This sample covered almost all active RECs in the country; only 4 (0.5%) were not evaluated. Of the 94 items evaluated, 62% did not reach the target of at least 80% compliance and around 1/4 (26%) were below 50% compliance. The diagnostic stage of the process revealed inadequacies on the part of the RECs in their ethical reviews. The analysis of informed consent forms showed compliance in only 131 RECs (15.74%). The description of pending issues made by RECs in their reports was compliant in 19.33% (n = 161). Administrative and operational aspects were also considered inadequate by more than half of the RECs. Conclusions Overall, Brazilian RECs showed poor compliance in several aspects of their operation, both in ethics evaluation and in other processes, which justifies additional training. The Q-CEP project is part of a quality improvement policy promoted by the Brazilian Ministry of Health. The data obtained in the diagnostic step of the project have contributed to the qualification and consolidation of one of the world’s largest research ethics evaluation systems. (shrink)

One of the essential ethical issues in the employment relationship is the loss of employee voice. Many of the ways employees have previously exercised voice in the employment relationship have been rendered less effective by (1) the changing nature of work, (2) employer preferences for flexibility that often work to the disadvantage of employees, and (3) changes in public policy and institutional systems that have failed to protect workers. We will begin with a discussion of how work has changed (...) in the last 20 years in countries like Australia and the United States, and then take up the issue of employees as organizational stakeholders and the ethical duties that are owed them, with special attention given to issues of power. We will then consider whether voluntary action by employers such as social auditing is sufficient to ensure equity for employees, and conclude with a discussion of how changes in public policy might ensure greater fairness in the employment relationship by bringing employers and employees together in partnership. (shrink)

Background. Africa has seen an increase in the number of health research projects being conducted on the continent, particularly clinical trials. Ideally, this should be accompanied by a commensurate improvement in research ethics review capacity to competently provide the much-required research ethics oversight. Unfortunately, this is not the case in many African countries, which are still grappling with weak research ethics oversight capacity, not only at national level but also at institutional level. Objectives. To describe the (...) proposal by Kenya’s national research ethics regulatory authority, the National Commission for Science Technology and Innovation (NACOSTI), to build the capacity of its National Scientific and Ethics Committee (NSEC), tasked with providing the required research ethics oversight in the country. Methods. This is the proposal submitted by NACOSTI to the European and Developing Countries Clinical Trials Partnership for funding of a project entitled ‘Strengthening Research Ethics and Oversight in Kenya’ (STReK). It describes the activities involved to strengthen the NSEC to provide the required research ethics in the country, and to build the research ethics capacity of research ethics committees (RECs) it has accredited, through training and mentorship programmes, to enable them to efficiently review research proposals. Results. Proposed activities of the project are presented. Implementation of the activities described is ongoing. Conclusion. Lessons learnt in this regard may be of benefit to other research ethics regulatory authorities in resource-constrained countries aiming to strengthen their research ethics oversight capacity. (shrink)

To address the prevalence and complexities of sustainable development challenges around the world, organizations in the business, government, and non-profit sectors are increasingly collaborating via multi-stakeholder partnerships. Because complex problems can be neither understood nor addressed by a single organization, it is necessary to bring together the knowledge and resources of many stakeholders. Yet, how these partnerships coordinate their collaborative activities to achieve mutual and organization-specific goals is not well understood. This study takes an organization design perspective of (...) collaborative decision-making processes to explore how they impact the effectiveness of multi-stakeholder partnerships. We compare the decision-making processes of 94 sustainability-focused multi-stakeholder partnerships and find that collaborative decision-making has an indirect and positive impact on partnership capacity through systems that keep partners informed, coordinate partner interactions, and facilitate ongoing learning. The implications of this study for multi-stakeholder partnership research and practice are that partnership capacity is contingent on the design of decision-making processes, as well as internal mechanisms that coordinate and monitor collaborative activities. (shrink)

The COVID-19 pandemic dramatically disrupted food and educational systems, laying bare institutional inadequacies and structural inequalities. While there has been ample discussion on impacts to the food system and higher education institutions separately, there has been little written through the perspective of people who navigate both. Farmers, researchers, graduate students, chefs, and many stakeholders contribute to community engaged scholarship (CES) in food systems, facing novel obstacles and opportunities with the spread of the pandemic. In this article, I utilize institutional ethnography (...) to center the experiences of the people who participated in or led CES projects during the spring and summer of 2020. The goal of this study is to understand how discourse and texts in the academic institution constrain the reality of CES partnerships and identify areas for change. My findings show that tenure and promotion guidelines and funding opportunities constrain CES partnerships, reducing opportunities for relationship building and discouraging innovative models of participation. Quantified evaluation metrics on grant rubrics and tenure and promotion guidelines privilege individual academic researchers growing large programs, writing lucrative grants for the university, and publishing profusely. However, community-led and decentralized projects were able to adapt to community priorities and sustain research projects during the pandemic. COVID-19 created obstacles to community engagement and allowed for creative approaches to community participation. By restructuring academic evaluation and funding processes to support problem-solving models of CES led by community partners, CES projects can support both academic and community priorities in times of disruption and relative stability. (shrink)

The growing body of literature on partnerships has paid most attention to their implications at the macro level, for society, as well as the meso level, for the partnering organisations. While generating many valuable insights, what has remained underexposed is the micro level, i.e. the role of managers and employees in partnerships, and how their actions and interactions can have an effect on the spread and potential effectiveness of collaborative efforts. This article uses a case-study approach to empirically (...) explore the patterns and potential boundary conditions of so-called ‘trickle effects’ of partnerships among individual actors within and outside partnering companies, which have thus far only been proposed conceptually. Based on interviews with employees from three different companies, we found an evidence of trickle-down and trickle-up effects with higher and lower management, as well as trickle-round effects with colleagues, family, friends and customers. The article discusses several partnership characteristics that seem to play a role, and notes implications for research and practice. (shrink)

This paper examines six cross-sector partnerships in South Africa and Zambia. These partnerships were part of a research study undertaken between 2003 and 2005 and were selected because of their potential to contribute to poverty reduction in their respective countries. This paper examines the context in which the partnerships were established, their governance and accountability mechanisms and the engagement and participation of the partners and the intended beneficiaries in the partnerships. We argue that a partnership (...) approach which has proven successful in one context can be used as a valuable learning resource. However, a partnership's work, which includes all aspects of the partnership and its activities, cannot necessarily be transferred directly to another partnership without a thorough and locally informed analysis of the context in which it is implemented. In addition, we suggest that it is difficult to assess whether the good intentions behind partnerships were translated into real benefits for target groups as effective monitoring and evaluation procedures were not in place in the partnerships studied. Similarly, the absence of regularised governance and accountability systems in partnerships made it difficult to support partner and beneficiary participation and engagement. We conclude that there is a need to move beyond a 'one-size-fits-all' approach to partnerships and that partnership replication should focus more strongly on the transfer of learning about partnership processes instead of simply copying partnership activities. Moreover, the development of stronger mechanisms for assessing and ensuring accountability towards both partners and intended beneficiaries is required if partnerships are to meet their intended objectives. (shrink)

The purpose of this action research project was to examine the lived experience of university and community participants in ethical decision making in the setting of an interprofessional university-community partnership. The participatory framework for applied ethics presented by Prilleltensky, Rossiter, and Walsh-Bowers informed the research design. University and community participants in the 4-year-old partnership were interviewed about the ethical dilemmas faced in the partnership and ways of dealing with these dilemmas that often took place in the (...) nexus of meeting the community's and students' needs. An important aspect of making sound ethical decisions was the availability of multiple opportunities for discourse in an environment open to learning. (shrink)

BackgroundThere have been notable investments in large multi-partner research programmes across the agriculture-nutrition-health (ANH) nexus. These studies often involve human participants and commonly require research ethics review. These ANH studies are complex and can raise ethical issues that need pre-field work, ethical oversight and also need an embedded process that can identify, characterise and manage ethical issues as the research work develops, as such more embedded and dynamic ethics processes are needed. This work builds (...) on notions of ‘ethics in practice’ by developing an approach to facilitate ethical reflection within large research programmes. This study explores the application of a novel ‘real-time research ethics approach’ (RTREA) and how this can support ethical mindfulness. This involves embedding ethical analysis and decision-making within research implementation, with a continuous dialogue between participants and researchers. The aim is to improve ethical responsiveness and participant experience, which in turn may ethically support adherence and retention. In this case study, a bioethics team (BT) was embedded in a community-based randomised, controlled trial conducted in rural Malawi, titled the ‘Addressing Hidden Hunger with Agronomy’. To identify ethical issues, the researchers conducted ten focus group discussions, fourteen in-depth interviews with key informants, two workshops, observed two sensitisation and three activity meetings conducted by the trial team, and analysed fifteen reports from pre-trial to trial implementation.ResultsThe RTREA facilitated the identification of social and ethical concerns and made researchers aware of participants’ ‘lived research experience’. To address concerns and experiences, the BT worked with researchers to facilitate conversation spaces where social and ethical issues were discussed. Conversation spaces were designed to create partnerships and promote participatory methods to capture trial participants’ (TPs) perspectives and experiences.ConclusionsThe use of RTREA showed the value of real-time and continuous engagement between TPs and researchers. These real-time processes could be embedded to complement traditional ethical guidance and expert opinions. A deeper engagement appeared to support greater operationalising of principles of inclusion, empowerment, and participant autonomy and supported researchers ‘ethical mindfulness’ which in turn may support instrumental outcomes of high recruitment, retention, and adherence levels. (shrink)

The growing body of literature on partnerships has paid most attention to their implications at the macro level, for society, as well as the meso level, for the partnering organisations. While generating many valuable insights, what has remained underexposed is the micro level, i.e. the role of managers and employees in partnerships, and how their actions and interactions can have an effect on the spread and potential effectiveness of collaborative efforts. This article uses a case-study approach to empirically (...) explore the patterns and potential boundary conditions of so-called ‘trickle effects’ of partnerships among individual actors within and outside partnering companies, which have thus far only been proposed conceptually. Based on interviews with employees from three different companies, we found an evidence of trickle-down and trickle-up effects with higher and lower management, as well as trickle-round effects with colleagues, family, friends and customers. The article discusses several partnership characteristics that seem to play a role, and notes implications for research and practice. (shrink)

This article examines five different Medical-Legal Partnerships associated with Yale Law School in New Haven, Connecticut to illustrate how MLP addresses the social determinants of poor health. These MLPs address varied and distinct health and legal needs of unique patient populations, including: 1) children; 2) immigrants; 3) formerly incarcerated individuals; 4) patients with cancer in palliative care; and 5) veterans. The article charts a research agenda to create the evidence base for quality and evaluation metrics, capacity building, sustainability, (...) and best practices; it also focuses specifically on a research agenda that identifies the value of the lawyers in MLP. Such a focus on the “L” has been lacking and is overdue. (shrink)

Place-based policies tackle grand socio-economic challenges through differentiated, context-sensitive interventions. However, they often run the risk of under- or mis-performing. This work studies how grand challenges translate from policy to cross-sector partnerships through place. By focusing on the place-based policy of regional smart specialization (RIS3), I investigate how the setup of science and technology parks mediates the practices of the actors in the translation chain: a transnational policymaker (macro), a regional broker (meso), and a local partnership which served as (...) prototype for the regional policy (micro level). I document two types of practices—emplacement and space configuration—enacted at each level, and show how their interplay transformed the grand challenge from a cautious ideal at the macro level which balances risk and responsibility, to an optimistic and risk-prone approach at the partnership level. The study contributes to the policy and cross-sector partnerships literatures by documenting a two-sided effect of place-based policy and a consequent risk of ethical reversal, from an early attractor bringing partners together to a later accomplice keeping the partners together despite evident signs of failure. By adopting a strong multimodal approach, I also distinguish four types of multimodal outcomes—ideal type, prototype, virtual model, and lived artifact—which perform the two-sided effect and bring about the risk of reversal. Practical implications include a redistribution of the burden of failure from the CSPs implementing the grand challenges to the institutional fields in which these are bred. (shrink)

The foundations of research ethics are riven with fault lines emanating from a fear that if research is too closely connected to weighty social purposes an imperative to advance the common good through research will justify abrogating the rights and welfare of study participants. The result is an impoverished conception of the nature of research, an incomplete focus on actors who bear important moral responsibilities, and a system of ethics and oversight highly attuned to the dangers (...) of research but largely silent about threats of ineffective, inefficient, and inequitable medical practices and health systems. -/- In For the Common Good: Philosophical Foundations of Research Ethics, Alex John London defends a conception of the common good that grounds a moral imperative with two requirements. The first is to promote research that generates the information necessary to enable key social institutions to effectively, efficiently, and equitably safeguard the basic interests of individuals. The second is to ensure that research is organized as a voluntary scheme of social cooperation that respects its various contributors' moral claims to be treated as free and equal. Connecting research to the goals of a just social order grounds a framework for assessing and managing research risk that reconciles these requirements and justifies key oversight practices in non-paternalistic terms. Reconceiving research ethics as resolving coordination problems and providing credible assurance that these requirements are being met expands the issues and actors that fall within the purview of the field and provides the foundation for a more unified and coherent approach to domestic and international research. -/- This is an open access title available under the terms of a CC BY-NC-ND 4.0 license. It is free to read at Oxford Scholarship Online and offered as a free PDF download from OUP and selected open access locations. (shrink)

The main question explored by the book is: How can cross-border access to human genetic resources, such as blood or DNA samples, be governed in such a way as to achieve equity for vulnerable populations in developing countries? The book situates the field of genomic and genetic research within global health and research frameworks, describing the concerns that have been raised about the potential unfairness in exchanges during recent decades. Access to and sharing in the benefits of human (...) biological resources are aspects not regulated by any international legal framework such as the Convention on Biological Diversity, which applies only to the exchange of plants, animals and microorganisms, as well as to associated traditional knowledge. Examples of genetic research perceived as exploitative are provided in order to illustrate the legal vacuum concerning the global governance of human genetic resources. The main conclusions drawn from the legal and ethical analysis are: - Benefit sharing is crucial in order to avoid the exploitation of developing countries in human genetic research. - With functioning research ethics committees, undue inducement is less of a concern in genetic research than in other areas of medical research (e.g. clinical trials). - Concerns remain over research involving indigenous populations; accordingly, recommendations are provided. In drawing these conclusions, the book addresses in detail a highly pressing topic in global bioethics and international law. In this regard, it combines bioethical arguments with jurisprudence, in particular with reference to the law of equity and the legal concepts of duress (coercion), unconscionable dealing, and undue inducement. (shrink)

In the US, stem cell research is at a moral impasse—many see this research as ethically mandated due to its potential for ameliorating major diseases, while others see this research as ethically impermissible because it typically involves the destruction of embryos and use of ova from women. Because their creation does not require embryos or ova, induced pluripotent stem cells offer the most promising path for addressing the main ethical objections to stem cell research; however, (...) this technology is still in development. In order for scientists to advance induced pluripotent stem cell research to a point of translational readiness, they must continue to use ova and embryos in the interim. How then are we to ethically move forward with stem cell research? We argue that there is personal integrity and value in adopting a ‘moral compromise’ as a means for moving past the moral impasse in stem cell research. In a moral compromise, each party concedes part of their desired outcome in order to engage in a process that respects the values and desires of all parties equitably. Whereas some contend that moral compromise in stem cell research necessarily involves self-contradiction or loss of personal integrity, we argue that in the US context, stem cell research satisfies many of the key pre-conditions of an effective moral compromise. To illustrate our point, we offer a model solution wherein eggs and embryos are temporarily used until non-egg and non-embryonic sources of pluripotent stem cells are developed to a state of translational readiness. (shrink)

Background: The research community has a mandate to discover effective treatments for neurodegenerative disorders. The ethics landscape surrounding this mandate is in a constant state of flux, and ongoing challenges place ever greater demands on investigators to be accountable to the public and to answer questions about the implications of their work for health care, society, and policy. Methods: We surveyed US-based investigators involved in neurodegenerative diseases research about how they value ethics-related issues, what motivates them to give (...) consideration to those issues, and the barriers to doing so. Using the NIH CRISP database we identified 1,034 researchers with relevant, active grants and invited them to complete an online questionnaire. We received 193 responses. We used exploratory factor analysis to transform individual survey questions into a smaller set of factors, and linear regression to understand the effect of key variables of interest on the factor scores. Results: Ethics-related issues clustered into two groups: research ethics and external influences. Heads of research groups viewed issues of research ethics to be more important than the other respondents. Concern about external influences was related to overall interest in ethics. Motivators clustered into five groups: ensuring public understanding, external forces, requirements, values, and press and public. Heads of research groups were more motivated to ensure public understanding of research than the other respondents. Barriers clustered into four groups: lack of resources, administrative burden, relevance to the research, and lack of interest. Perceived lack of ethics resources was a particular barrier for investigators working in drug discovery. Conclusions: The data suggest that senior level neuroscientists working in the field of neurodegeneration (ND), and drug discovery specifically, are motivated to consider ethics issues related to their work, but the perceived lack of ethics resources thwarts their efforts. With bioethics centres at more than 50% of the institutions at which these respondents reside, the neuroscience and bioethics communities appear to be disconnected. Dedicated ethical, legal and social implications (ELSI) programs, such as those fully integrated into genetics and regenerative medicine, provide models for achieving meaningful partnerships not yet adequately realized for scholars and trainees interested in drug discovery for ND. (shrink)

This article highlights and evaluates the role of CEPI and its contribution to global equitable access to COVID-19 vaccines through its established partnerships for vaccine development. The article adds to the understanding of how and when such partnerships can work for public health, especially under emergency citations.

Background Equitable care is a fundamental value in the nursing profession. Healthcare workers have both a moral and professional duty to ensure that they do not discriminate. Aim This study aimed to explore how patients perceive equitable nursing care. Research design, participants, and research context This descriptive phenomenological qualitative research study used purposeful sampling to select 17 patients from various departments of a general hospital in southern Iran. The participants were then interviewed using a semi-structured (...) in-depth interview format, which aimed to delve into their experiences with equitable nursing care. The collected data were analyzed using Colaizzi's seven-step method and MAXQDA20 software. Ethical considerations Oral and written information about the study was provided before the participants gave their written consent. The transcribed interviews were de-identified. The study was approved by the Ethics Committee of Jiroft University of Medical Sciences. Findings The data analysis of the study identified three main themes and six subthemes that were related to the experiences of patients with equitable nursing care. The first theme, equitable care, encompassed subthemes such as nurses’ dedicated efforts to facilitate patient recovery and adherence to ethical behavior. The second theme, unconscious causes of inequitable nursing care, included subthemes such as unintentional discrimination stemming from organizational constraints and unconscious biases resulting from a lack of knowledge and skills. The third theme, discriminatory care, comprised subthemes such as deliberate discrimination based on personal traits and selective discrimination. Conclusion The study findings indicate that achieving equitable nursing care requires a multifaceted approach. This includes effective hospital management, organizational reforms, and regulatory enhancements. Additionally, it is crucial to pay close attention to the needs of patients, enhance nurses’ theoretical and practical skills in providing equitable care, fostering a culture of equality within healthcare settings, and consider the personality dimensions and moral characteristics of nurses. (shrink)

This article reviews some of the ethical aspects of collaborative research. Scientific collaboration has known potential benefits but it’s a challenging task to successfully accomplish a collaborative venture on ethically sound grounds. Current trends in international healthcare research collaboration reflect limited benefits for the majority of world population. Research collaboration between scientists of academia and industry usually has financial considerations. Successful cross-cultural and international collaborations have to overcome many regional and global barriers. Despite these difficulties, many (...) scientific collaborations usually begin with an informal meeting or contact. With advancement in global communications, scientists have greater responsibility towards the world community while considering the impact of their collaborative partnerships. I review the basic factors that are required for forging a collaborative partnership and responsible attitudes to sustain the relationship. Finally I conclude that scientists in healthcare research can play important roles beyond collaborations and contribute to bringing harmony, resolving differences across the nations and countries in today’s troubled world. (shrink)

This paper addresses the topic of this special symposium issue: how to enhance the impact of cross-sector partnerships. The paper takes stock of two related discussions: the discourse in cross-sector partnership research on how to assess impact and the discourse in impact assessment research on how to deal with more complex organizations and projects. We argue that there is growing need and recognition for cross-fertilization between the two areas. Cross-sector partnerships are reaching a paradigmatic status in (...) society, but both research and practice need more thorough evidence of their impacts and of the conditions under which these impacts can be enhanced. This paper develops a framework that should enable a constructive interchange between the two research areas, while also framing existing research into more precise categories that can lead to knowledge accumulation. We address the preconditions for such a framework and discuss how the constituent parts of this framework interact. We distinguish four different pathways or impact loops that refer to four distinct orders of impact. The paper concludes by applying these insights to the four papers included in this special issue. (shrink)

In this article I review the principal arguments in favour of and against the UK government’s recent proposals to allow access to NHS patient records to life sciences companies as part of the NHS–Life Sciences partnership scheme.