This guide accompanies the following article(s): ‘Full Disclosure of the “Raw Data” of Research on Humans: Citizens’ Rights, Product Manufacturer’s Obligations and the Quality of the Scientific Database.’Philosophy Compass 6/2 (2011): 90–99. doi: 10.1111/j.1747‐9991.2010.00376.x Author’s Introduction Securing consent (and informed consent) from patients and research study participants is a key concern in patient care and research on humans. Yet, the legal doctrines of consent and informed consent differ in their applications. In patient care, the judicial (...) doctrines of consent and informed consent are disclosure doctrines based on the obligation of physicians to inform their patients of the following types of information: the nature of the procedure the physician is recommending in the patent’s care (P), the alternatives to the physician‐recommendation (A), and the risks of procedure and its alternatives (R). In addition, the physician must provide truthful answers to the patient’s questions (Q) to the best of the physician’s abilities. In research on humans, the onus of disclosure by study sponsors and principal investigators is much greater than in patient care precisely because the purpose of research is not patient care. The purpose of research is the identification and development of new generalizable knowledge. Thus, participation in a research study or trial may not benefit the study volunteer at all. In addition, the participant may carry a heavy risk burden in relationship to any testing of a newly designed drug or device as part of their experiences in the research study. Presently, despite the risks borne by the research study participant, the raw data collected from volunteers in research trials are treated by courts as if they were the private property of the study sponsor rather than generally owed to the public as would be expected by an effort like research participation aimed at contributing to the development of generalizable knowledge. This paper reviews the obligations that study sponsors owe to their study participants based on the very definition of research as a systematic activity whose purpose is to develop generalizable knowledge to help all humans. Author Recommends Court cases Canterbury v. Spence, United States Court of Appeals, District of Columbia Circuit 464 F.2d 772 (1972). (Federal appellate decision heard in the District of Columbia, USA) Reibl v. Hughes, 2 S.C.R. 880 (1980). (Supreme Court of Canada) Rogers v. Whitaker, 175 C.L. R. 479 (1992). (High Court of Australia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Canterbury v. Spence is the landmark Federal informed consent case in the United States heard in the District of Columbia. In this case, Judge Spottswood Robinson articulated the reasonable person standard of informed consent. This standard was subsequently adopted by the Supreme Court of Canada (Reibl v. Hughes, 2 S.C.R. 880 (1980)) and the High Court of Australia (Rogers v. Whitaker, 175 C.L. R. 479 (1992)). The House of Lords rejected the reasonable person standard in England in Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985). Book Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. This book is a detailed guide for the review of scientific and ethical aspects of research on humans contained in the research study protocols and research informed consent forms which need to be submitted by study sponsors and principal investigators to institutional review boards (IRBs) for IRB review before a research study can receive approval to be conducted within a human study population in those institutions over which the IRB has authority. It also presents basic definitions in the area of research on humans and basic approaches to help conduct a deep review of the underlying scientific and ethical issues that are present within a research study protocol and its accompanying research informed consent form. Report National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical Guidelines for the Protection of Human Subjects of Research. Washington, DC: DHEW Publications, 1978 (78‐0012). This U.S. National Commission in the Belmont Report argued for the necessity of a reasonable volunteer standard in research on humans in the United States. Arguing that the professional standard and the reasonable person standard of consent and informed consent were insufficient to base a disclosure standard in research on humans, this National Commission developed the reasonable volunteer standard where a study participant is to be approached in research informed consent with that information that a reasonable volunteer would want to know. Online Materials Belmont Report: Syllabus Topics for Lecture and Discussion Week I: Introduction and Overview Readings: Rogers v. Whitaker, 175 C.L.R. 479 (1992). (High Court of Australia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Week II: The Different Standards of Consent and Informed Consent Readings: Canterbury v. Spence, 464 F.2d 772 (1972). (Federal appellate opinion heard in the District of Columbia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Week III: Definition of Research Reading: Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. (Especially Chapters 2 and 3) Week IV: How to Review a Research Study Protocol and Research Informed Consent Form Reading: Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. (Especially Chapters 4–6, 10, and 12–14) Week V: Obligations in Research of Humans Versus Patient Care Reading: National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical Guidelines for the Protection of Human Subjects of Research. Washington, DC: DHEW Publications, 1978 (78‐0012). Focus Questions • How do the judicial doctrines of consent in England and Australia compare to the judicial doctrines of informed consent in the United States and Canada? • How does a professional standard of disclosure differ from a reasonable person standard of disclosure? • What is the definition of research? • How is a research study (study proposal and research informed consent form) reviewed from scientific and ethical bases for considerations of approval by an IRB? • How do the obligations of a study sponsor, a principal investigator, and a research team conducting a research trial on human study participants differ from the obligations of a physician caring for a patient? • Should all raw data of research derived from humans be made available to the public for use in developing generalizable knowledge to help others, or should raw data be considered the private property of the study sponsors (for example, prescription drug manufacturers), who fund the research trials? Seminar/project Idea Draw a timeline of the development of the basic concepts of consent and informed consent in patient care and in patient research. On this timeline, first place the dates of the key court cases in England, the United States, Canada, and Australia on consent and informed consent. Then place the date of the development of the Belmont Report. Why do differences exist between these four countries in terms of the legal requirements of informedness of a patient (in medical care) and a study participant (in medical research)? What roles if any do the concepts of self‐determination and self‐decision have in consent and informed consent in patient care and in informed consent in research on humans among the four countries of interest? What are the realities of research on human participants that require a new standard of informed consent, the reasonable volunteer standard, to be developed beyond the two standards in patient care, the professional standard, and the reasonable person standard? Counterpoint Arguments The following are counterpoint arguments that need to be appreciated to more fully understand the concepts that impact the thesis that ‘raw data’ should be open to the public to allow the opportunity of checking of the results of its associated scientific paper and for further analysis. De‐Identified (Anonymized) Raw Data A current approach to identifying (anonymizinig) raw data is based on the Health Insurance Portability and Accountability Act (HIPAA) of 1996 (P.L.104‐191). HIPAA was enacted by the U.S. Congress in 1996 to keep a person’s medical information private. In a research study, a person’s private medical information can become research data. HIPAA’s Privacy Rule allows a covered entity to de‐identify data by removing all 18 elements that could be used to identify the individual or the individual’s relatives, employers, or household members; these elements are enumerated in the Privacy Rule. The covered entity must also have no actual knowledge that the remaining information could be used alone or in combination with other information to identify the individual who is the subject of the information. Under this method, the identifiers that must be removed are the following: 1 Names. 2 All geographic subdivisions smaller than a state, including street address, city, county, precinct, ZIP Code, and their equivalent geographical codes, except for the initial three digits of a ZIP Code if, according to the current publicly available data from the Bureau of the Census: 2a. The geographic unit formed by combining all ZIP Codes with the same three initial digits contains more than 20,000 people. 2b. The initial three digits of a ZIP Code for all such geographic units containing 20,000 or fewer people are changed to 000. 3 All elements of dates (except year) for dates directly related to an individual, including birth date, admission date, discharge date, and date of death, and all ages over 89 and all elements of dates (including year) indicative of such age, except that such ages and elements may be aggregated into a single category of age 90 or older. 4 Telephone numbers. 5 Facsimile numbers. 6 Electronic mail addresses. 7 Social security numbers. 8 Medical record numbers. 9 Health plan beneficiary numbers. 10 Account numbers. 11 Certificate/license numbers. 12 Vehicle identifiers and serial numbers, including license plate numbers. 13 Device identifiers and serial numbers. 14 Web universal resource locators (URLs). 15 Internet protocol (IP) address numbers. 16 Biometric identifiers, including fingerprints and voiceprints. 17 Full‐face photographic images and any comparable images. 18 Any other unique identifying number, characteristic, or code, unless otherwise permitted by the Privacy Rule for re‐identification. Even though ‘raw data’ can be de‐identified (anonymized) so that there is no way to trace back the data to the study participant from which it was drawn, there are still questions whether the ‘de‐identified raw data’ can be given to other researchers or made public without the original study participant’s approval. It may be the case that this approval could be done at the start of any research study where the individual considering study participation would be counseled on what the process of de‐identification consists of and would be asked whether the participant would allow use of the data by other researchers or made available to the public in a de‐identified state. However, there may be questions of the study participants as to whether the data are truly de‐identified and untraceable back to the study participant since the participant would not be able to see the process actually being carried out in detail in all relevant circumstances. Using Raw Data in Context Simply being in possession of raw data is never enough to build on that data from a research perspective. Researchers need to understand the context of the scientific research study in which the data were collected. This research context includes (but is not limited to): (i) the scientific hypothesis of the research study, (ii) the inclusion and exclusion criteria selected by the research designers of the study to determine which study participants were included and which were excluded from the study, (iii) the methods used to collect the data and possibilities of errors in the data collection processes, and (iv) answers to questions regarding whether any data were excluded from the study data and why these data were excluded. Ownership Rights Over Data There are ownership rights over data. Ownership rights include court decision making related to the question which parties are to be considered as the owners of the data. Possible owners here include (but are not limited to) (i) the study sponsor whose only role was to fund that study, (ii) the principal investigator(s) who developed the scientific hypothesis, and (iii) individual study participants through special contracts made by individual participants who negotiate such contracts with study sponsors and principal investigators to share in the ownership of data. Examples of such data are participant sources of unique gene lines or unique cell lines to be used in future research. Objections to Data Sharing Finally, individual researchers may simply object to sharing data. A researcher’s arguments here may be simply stating that he or she has a right to fully analyze the data since the collection of the data was the researchers’ idea in the first place. These researchers may argue that they have the right to mine the data as fully as they can before deciding to make the data open to the public for others to analyze. Works Cited 1 Kaiser, J. ‘Making Clinical Data Widely Available.’Science 322.5899 (10 Oct. 2008): 217–8. 2 de Lusignan, S., J.F. Metsemakers, P. Houwink, V. Gunnarsdottir, and J. van der Lei. ‘Routinely Collected General Practice Data: Goldmines for Research? A Report of the European Federation for Medical Informatics Primary Care Informatics Working Group (EFMI PCIWG) from MIE2006, Maastricht, The Netherlands.’Informatics in Primary Care 14.3 (2006): 203–9. 3 Sim, I. ‘Human Studies Database Project’, CTSA Data Repositories Symposium (17 Oct. 2008). 23 Nov. 2010. 4 Sim, I., C.G. Chute, H. Lehmann, R. Nagarajan, M. Nahm, and R.H. Scheuermann. ‘Keeping Raw Data in Context.’Science 323.5915 (6 Feb. 2009): 713. 5 U.S. Department of Health and Human Services, National Institutes of Health, HIPAA Privacy Rule, Information for Researchers. 13 Nov. 2010. 6 Wilczynski, N.L., R.B. Haynes, and Hedges Team. ‘EMBASE Search Strategies for Identifying Methodologically Sound Diagnostic Studies for Use by Clinicians and Researchers.’BMC Medicine 29.3 (March 2005): 7. (shrink)

This paper considers concerns that social care research may be stifled by health-focused ethical scrutiny under the Mental Capacity Act 2005 and the requirement for an ?appropriate body? to determine ethical approval for research involving people who are deemed to lack capacity under the Act to make decisions concerning their participation and consent in research. The current study comprised an online survey of current practice in university research ethics committees (URECs), and explored through semi-structured (...) interviews the views of social researchers engaged in or exploring work concerning people who may, under the Act, lack the capacity to make decisions to consent to participate in a research programme. The paper concludes that there was a lack of overt knowledge of and reference to the implications of the Act for research and some concerns that a restrictive focus on health-related scrutiny might prevent social care research from taking place. There was also a degree of creativity shown by social care researchers in responding to changing demands and a wish to assist people in making decisions to participate where possible. (shrink)

This article examines bioethics in Tanzania, particularly in relation to the HIV/AIDS epidemic for the following reasons: First, not only is HIV/AIDS the most alarming health problem in most parts of Africa, but the complexity of issues involved in medical and research ethics clearly illustrates the various levels of problems that bioethics—more precisely, both professional medical ethics and research ethics—faces in a poor, developing country. The article defends uniformity in the general, international bioethical guidelines but calls for wider (...) discussion in their applicability in different economic and social conditions by claiming that in the present debates the issues of distributive justice, culture, and individual professional judgment have been tangled together in a manner that tends to justify double standards in practice. To avoid this confusion there is a need to find a more coherent approach to bioethics that brings together the normative requirements set by international guidelines, national policy planning, social ethics, and professional medical ethics. a. (shrink)

Background: Many nursing homes appear as multicultural workplaces where the majority of healthcare providers have an ethnic minority background. This environment creates challenges linked to communication, interaction and cultural differences. Furthermore, the healthcare providers have varied experiences and understanding of what quality care of patients with dementia involves. Purpose: The aim of this study is to illuminate multi-ethnic healthcare providers’ lived experiences of their own working relationship, and its importance to quality care for people with dementia. Research (...) design: The study is part of a greater participatory action research project: ‘Hospice values in the care for persons with dementia’. The data material consists of extensive notes from seminars, project meetings and dialogue-based teaching. The text material was subjected to phenomenological-hermeneutical interpretation. Participants and research context: Participants in the project were healthcare providers working in a nursing home unit. The participants came from 15 different countries, had different formal qualifications, varied backgrounds and ethnic origins. Ethical considerations: The study is approved by the Norwegian Regional Ethics Committee and the Norwegian Social Science Data Services. Findings: The results show that good working relationships, characterized by understanding each other’s vulnerability and willingness to learn from each other through shared experiences, are prerequisites for quality care. The healthcare providers further described ethical challenges as uncertainty and different understandings. Discussion: The results are discussed in the light of Lögstrup’s relational philosophy of ethics and the concepts of vulnerability, ethic responsibility, trust and openness of speech. Conclusion: The prerequisite for quality care for persons with dementia in a multicultural working environment is to create arenas for open discussions between the healthcare providers. Leadership is of great importance. (shrink)

The rapidly changing field of genetics affects society through advances in health-care and through implications of genetic research. This study addresses the impacts of new genetic discoveries and technologies on different segments of today's society. The book begins with a chapter on genetic complexity, and subsequent chapters discuss moral and ethical questions arising from today's genetics from the perspectives of health care professionals, the media, the general public, special interest groups and commercial interests.

Using data on submitted and published manuscripts in Feminist Economics from 1995 to 2019, we examine differences in method and scope used by authors residing in the Global North and Global South. We specifically focus on research methods, intersectional analyses, region of analysis, and co-authorship status. Further, using logistic regression models, we examine the relationship between authors’ location and use of research methods. We find authors in the Global South are more likely to engage in empirical and mixed-methods (...) papers compared to Global North authors in our sample. Moreover, a greater share of Global South authors engage in intersectional analysis and exhibit geographical focus on developing countries. Drawing insights from the Feminist Economics manuscripts data, we argue that encouraging Global South research can contribute to the goals of the field of feminist economics – aimed at inclusivity, diversity of standpoints, and plurality in research methods, thereby improving overall economic research. (shrink)

Emergency care research sometimes involves incapacitated adults as research participants. The ethical principle of respect for autonomy may not necessarily apply to an incapacitated person unable to act in an autonomous manner, although it can be argued that researchers still have a duty of respect towards such people because they have moral status despite being incapacitated. Sharing some common ground with theories of moral status based on ‘humanness’ and the ability for rational thought is the notion of (...) human dignity, which features in arguments regarding researcher conduct with incapacitated patients. However, human dignity premised upon the unique ability of humans for rational thought and moral self-regulation is contingent upon these capabilities – a limitation that possibly makes dignity a less useful framework for research conduct in emergency care research. In this article, I will discuss the different conceptions of human dignity – as equality, status and virtue – and then draw on more recent literature that explains human dignity as a social constraint and as a factor influencing the conduct of healthcare professionals and researchers. I will address questions of whether dignity as a principle ought to apply only to those who have the ability to think rationally, or to all humans regardless of their condition or mental status. I will argue that, in relation to offering protection to research participants in emergency conditions, it is immaterial which view is taken. (shrink)

This article focuses on the governance and ethical conduct of research within the domain of social work and social care. Globally, research in this domain appears less well regulated than those in the domains of health care. Within the United Kingdom, the Westminster government is implementing a Research GovernanceFramework for Social Care in England (RGF Social Care). This article locates this development in a broader global context and uses as (...) an example a regionally based implementation to explore some potential issues that arise from the governance and ethical framework in social work and social care. The proposed system is located with English local authorities. Various models are emerging: single department; corporate; dual or multi-council collaborations; cross-sector collaborations. Whatever the merits of the organizational form adopted, the influence of different cultures upon the form of governance and ethical regulation adopted is significant. (shrink)

Social Facts and Collective Intentionality is a combination of terms that refers to a new field of basic research. Written mainly in the mood and by means of analytical philosophy, at the very heart of this new approach is conceptual explication of all the various versions of social facts and collective intentionality and its ramifications. This approach tackles the topics of traditional social philosophy using new conceptual methods, including techniques of formal logic, computer simulations, and artificial (...) intelligence. Such research also addresses careful research relating to ontological, epistemological, normative and--last but not least-- methodological questions. This volume represents the state of the art in this new field. The volume and its contributors tackle a series of vexing issues in the social sciences: (1) the sense of affiliation to large in contrast to small groups, (2) whether collective membership is the same as common knowledge, (3) the worth of information exchange based on faulty data, (4) the difference between standards of information and transfer of information, and (5) whether reliability is grounded in personal experience or as members in epistemic communities or networks. Contributors to this volume have a strong commitment to the social or collective character and mutual interplay of scientific information. "Collective Intentionality" is the term chosen by researchers working in this cross-disciplinary field. The group is currently conducting research in areas such as artificial intelligence, linguistics, logic, and the philosophy of the social sciences. Its work is distinguished by issues of collective behavior such as jointness, groupness, we and us. The present volume covers the state of the art of collective analysis, while fully appreciating that it is a stepping stone, albeit an important one, in redirecting the attention of basic philosophy away from the individual to the collective mode of exact analysis. Georg Meggle is professor for philosophical foundations of anthropology and of cognitive sciences at the University of Leipzig, Germany. He is a key contributor to Realism in Action with a study of Common Belief and Common Knowledge, and author of an earlier study of theoretical foundations of semantics. (shrink)

This paper provides evidence for the following novel insights: (1) People’s economic decisions depend on their psychological motives, which are shaped predictably by the social context. (2) In particular, the social context influences people’s other-regarding preferences, their beliefs and their perceptions. (3) The influence of the social context on psychological motives can be measured experimentally by priming two antagonistic motives—care and anger—in one player towards another by means of an observance or a violation of a fairness (...) norm. Using a mediation approach, we find that the care motive leads to higher levels of cooperation which are driven by more optimistic beliefs, a different perception of the game as well as by a shift towards more pro-social preferences. (shrink)

Background Professional values create a basis for successful collaboration and person-centred care in integrated care and services. Little is known about how different health and social care workers assess their professional values. Research aim To describe and compare professional value orientation among different health and social care workers in Finland. Research design A quantitative cross-sectional study. Participants and research context We carried out an online survey of health and social (...) class='Hi'>care workers from 8 March to 31 May 2022, using the Finnish version of the Nurses’ Professional Values Scale-3. The data were analysed using descriptive and advanced statistics. Ethical considerations Permission was received from all participating organizations and those who completed the survey provided informed consent. Results A total of 1823 health and social care workers, representing seven professional groups and students, took part. The overall level of professional values among the participants was relatively high. Commitment to providing patients and clients with equal care was more important than engaging with society and professional responsibilities in the work environment. Professional values were strongest among professionals with higher educational degrees and training in professional ethics. The same was true for workers who received organizational support for ethical practice, were satisfied with their work and had shorter work experience. Discussion Our results showed shared professional values among different health and social care workers and students. These results are meaningful for integrated care and services. At the same time, a clear need for strengthening engagement with society and professional responsibilities for developing work environments were identified. Conclusions Health and social care workers and students need training in professional ethics and organizational support for ethical practice and work satisfaction to maintain their professional values at different stages of their career. (shrink)

Bioethics has developed approaches to address ethical issues in health care, similar to how technology ethics provides guidelines for ethical research on artificial intelligence, big data, and robotic applications. As these digital technologies are increasingly used in medicine, health care and public health, thus, it is plausible that the approaches of technology ethics have influenced bioethical research. Similar to the “empirical turn” in bioethics, which led to intense debates about appropriate moral theories, ethical frameworks and meta-ethics (...) due to the increased use of empirical methodologies from social sciences, the proliferation of health-related subtypes of technology ethics might have a comparable impact on current bioethical research. This systematic journal review analyses the reporting of ethical frameworks and non-empirical methods in argument-based research articles on digital technologies in medicine, health care and public health that have been published in high-impact bioethics journals. We focus on articles reporting non-empirical research in original contributions. Our aim is to describe currently used methods for the ethical analysis of ethical issues regarding the application of digital technologies in medicine, health care and public health. We confine our analysis to non-empirical methods because empirical methods have been well-researched elsewhere. Finally, we discuss our findings against the background of established methods for health technology assessment, the lack of a typology for non-empirical methods as well as conceptual and methodical change in bioethics. Our descriptive results may serve as a starting point for reflecting on whether current ethical frameworks and non-empirical methods are appropriate to research ethical issues deriving from the application of digital technologies in medicine, health care and public health. (shrink)

There is a growing interest in researching the plight, health, and social care needs of forced migrants and the complex ethical issues related to researching this vulnerable group. Conducting health and social care research with forced migrants is a sensitive and complex issue and can place emotional demands on contributors, requiring high ethical and moral standards which safeguard participants, researchers and the integrity of the study. Researchers and those who review research need to be (...) sensitive to the needs, privacy and fears of participants. In addition to the medical and personal benefits that can be obtained from undertaking research with forced migrants, there comes the risk of stigmatization, exploitation and harm. This paper identifies some, but by no means all, key ethical issues confronting researchers, these dilemmas include the complex issues of language and translation, immigration status, contextual issues, lack of familiarity with the research process, issues of informed consent and safeguarding anonymity. Confidentiality, sensitivity to cultural traditions and values, and avoiding re-traumatization also need to be considered as this knowledge can minimize research risks and protect the rights and welfare of research participants. This paper will draw upon experience of working with refugees and asylum seekers for many years and from experience gained from small-scale qualitative research undertaken with Somali and Ethiopian forced migrants. It argues for the need for a consistent, robust, ethical framework to ensure that the ‘researcher’ does not inadvertently ‘do harm’ by infringing on the security, privacy and well-being of the subjects of the research. This paper in turn adds to the knowledge base on good practice and research ethics and is hoped that it will provide useful guidance for those undertaking the ethical review for this type of research. (shrink)

While caregiving in northern, rural and remote communities takes place in the context of conditions unique to smaller communities, caregivers live with social policies that are shaped by urban norms rather than rural realities. In times of economic decline and government cuts rural issues of limited services and infrastructure as well as dependency on a single industry can lead to unemployment, community and family instability, and a decline in health and well-being. During these times caregivers face increased pressure to (...) voluntarily fill the gaps left by service cuts. Research with women caregivers in four communities in northern British Columbia (BC), Canada explores the experiences of caring and the social, geographic, economic and political contexts within which the caregiving occurs. The discourse of economic efficiencies that speaks solely to the monetary value of care is contrasted with the human condition of connectedness and relationships. These two contradictory perspectives are uncovered during interviews with women caregivers and analyzed in the framework of Olena Hankivsky's discussion of an ethic of care. (shrink)

The growing demand for research that is culturally sensitive and contextually relevant is leading to a greater acceptance of indigenous paradigms. Despite this, African philosophy, with its rich cultural and ethical dimensions, is still developing as a field. This paper delves into the philosophical concepts of Ubuntu, Ukama and Consciencism, exploring the ontology, epistemology, axiology and methodology of indigenous African philosophy. It highlights the importance of relationships, community, interconnectedness and a holistic understanding of human existence and experiences. Indigenous African (...) philosophy presents itself as an alternative framework for addressing health and social issues through co‐creation, active participation and empowerment. Ontologically, it focuses on relativism and individuals defined by their social and relational contexts. Epistemologically, it values the social construction of knowledge, which should be shared for the benefit of others. Relational ethics are central to African axiology. Together, the ontological, epistemological and axiological basis of African philosophy form a unique paradigm that emphasize community and examine phenomena in both physical and spiritual contexts to achieve a comprehensive understanding. (shrink)

When anthropologists and other social scientists study health services in medical institutions, tensions sometimes arise as a result of the social scientists and health care professionals having different ideas about the ethics of research. In order to resolve this type of conflict and to facilitate mutual learning, we describe two general categories of research ethics framing: those of anthropology and those of medicine. The latter focuses on protection of the individual through the preservation of autonomy (...) expressed through the requirement of informed consent whereas the former focuses on broader political implications. After providing an example of a conflict, we outline four issues that characterize the occasional clashes between social scientists and medical staff: (1) a discrepancy in the way anthropologists perceive patients and medical staff; (2) ambiguity concerning the role of medical staff in anthropological research; (3) impediments to informed consent in qualitative research projects; and (4) property rights in data. Enhanced dialogue could serve to invigorate the ethical debate in both traditions. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Hispanic Utopian Studies and Activism as a PromptJulia Ramírez-Blanco (bio)In the last few years I have come to the Utopian Studies Societýs yearly conference as part of a smaller group, one that has its own parallel history in the left corner of the South of Europe and is networked mostly with Latin America. I am referring to the interdisciplinary research group Histopia, which has its base in Madrid́s (...) Autónoma University, is comprised of twenty-seven researchers from different institutions, and is coordinated by historian Juan Pro. As the name Histopia suggests, it was founded by historians. From the beginning there have been people from other fields, such as political science, architecture, cultural studies, and art history. The aim was always understanding utopianism beyond the study of texts, and centering research in everything that utopianism produces, such as social movements, political programs, and urban programs. In this sense, a premise was to understand utopias not as a footnote in history or a series of eccentric events, but as a guiding force that drives a [End Page 510] history. This placing of utopianism in history was clearly announced in the grouṕs website:Histopia seeks to go beyond the philological approach that predominates in Utopian Studies and to historicize the study of contemporary utopias and dystopias, showing how they respond to the contexts in which they arise, since they reflect the problems and frustrations of a society as well as the aspirations for change it contains, and the conditions of possibility that a particular cultural and emotional framework offers for developing them.1Together with this focus on history, which departs from the more text-centered traditions of an important part of utopian studies, the other main particularity of Histopia is its decentralizing of utopian studies towards the Spanish-speaking world. And to this end, the group also founded the Transatlantic Network for the Study of Utopias, which was created in 2015 to put in communication over 250 researchers, most of them from Latin America, but also from other places such as Australia or Japan.2The Spanish statés research funding programs have provided the bureaucratic framework and the material resources for the research group since 2015. Together with seminars, conferences, or workshops, the resulting publications have been linked with utopian literature, with dystopia, and with a focus on viewing history through the lens of utopia. One of the most recent endeavors has been a radically collective one, articulating a Dictionary of Utopian Places written by a multitude of authors.3 Histopia has also initiated several projects with schools, for the most part ongoing, and there have been many attempts to disseminate its work through radio and video projects. And since its founding, Histopia has tried reaching out beyond the Academy—an effort that is finally gaining success. In 2021 the international conference Intentional Communities: Concrete Utopias in History was extremely fruitful: we saw involved participation both in various interventions, and through activities such as streaming. Participants included people and organizations from social movements and from intentional communities.I want to argue here that the very formation of Histopia was a logical development from certain political triggers—and in particular, the so-called 15M Movement, a series of anti-austerity protests and direct-democracy initiatives that ignited antigovernment activism throughout Spain from 2011 on, culminating in the occupation of urban spaces (“encampments”) and in very large political assemblies. It is not just that the forces of activism were [End Page 511] reignited after 2011, and that its inheritors came together with the Histopia research group; the very existence of Histopia, I am arguing, can be read as a consequence of the 15M encampment and its aftermath.Prefigurative PracticesIn May 2011, following the example of the Arab world, Madrid’s Puerta del Sol was populated by a crowd armed with posters, slogans, and self-made banners. On the inhospitable ground of the square, anonymous persons erected an encampment so complex that it functioned as a miniature city, with spaces for preparing food, for nursery care, for rest, for legal consultation, for anti-racist and/or feminist activity. All work was voluntary, and materials were... (shrink)

Sarah E. Wilson, University of Central LancashireThis paper's account of the core issues at stake in relation to genetic enhancement is presented as an alternative to mainstream liberal defenses of enhancement. The mainstream arguments are identified as being associated with reproductive autonomy, individual choice, and a `neutral', passive interpretation of technology. The alternative account is associated with the perspective of `woman' or child-bearer, with a fundamental concern for social justice, and an understanding of society in both a global and (...) a contextual sense. This paper adopts a theoretical framework informed by feminist ethics, particularly a feminist ethic of care. The paper begins by outlining some of the key points of the care perspective, highlighting how this contrasts with a mainstream `justice' perspective, and illustrating how this is reflected in arguments relating to genetic enhancement. The paper then turns to a consideration of how a care perspective might be applied to questions of genetic enhancement, and how this may bring forward new issues. This includes in particular a consideration of IVF technologies and how applying understandings from research into this area brings forward usually unaddressed concerns in considering genetic enhancement. The final section of the paper covers some of the questions that there is space to ask once the narrow focus on individual rights is overcome. (shrink)

The researcher : researching and developing ourselves -- The participant : responsibility, care and consideration -- Relational ethics : the relationship between the researcher and the participant -- Establishing trust : the fundamental ingredients -- Research dilemmas, decisions and details -- Research ethics committees : structures and procedures -- The social and political contexts of research and the ethics of dissemination.

In 2016, the Atlanta Community Food Bank launched the Stabilizing Lives project to develop programs and policies that could better address clients’ needs as well as including clientele as part of the planning process. The ACFB partnered with a research team at the University of Georgia to conduct a participatory research project aimed at developing deeper insights into the factors contributing to both instability and stability in the lives of pantry clientele. This article describes the outcomes this (...) class='Hi'>research, offering both a substantive contribution to scholarship on food insecurity and emergency food systems and a methodological innovation through a staged mixed-method participatory research project. Through use of a culture-centered approach, this project created discursive spaces within which to outline emergency food models that support informal networks of care. We used a range of methods, including photo elicitation, concept mapping, individual interviews, and focus groups, to facilitate conversation among agency staff, volunteers, and clientele about the effectiveness of current program models and potential new ideas. Specifically, we suggest that through such practices, food pantries and local agencies may help inform new program models that contribute to household stability, and push back against the sometimes alienating and atomizing paradigm found in current emergency food programs. (shrink)

This paper, based on a talk given at a conference on compassion in health care held at the Royal Society of Medicine in November 2012, argues that the ethical requirement for humanity in health care is obvious and needs little ethical analysis – the problem is to get the results of ethical reflection, ordinary humanity and everyday common sense, into everyday behaviour. The author offers some suggestions that might help to achieve this aim and bring back the human (...) face of health and social care. These suggestions concern organisational structural changes (including `humanity objectives' in appraisal and reward schemes); individual attitudes (including self assessment of their own humanity in their work by all health and social care workers – `does my own practice manifest a human face?'); and a possible research agenda (and a concomitant effort to remind all health care research funders that `humanity is an integral component of medical, health and care research'. And the author proposes a standing high level `humanity task force' to implement and oversee Health Education England's recent `humanity mandate'. (shrink)

The 2016 CIOMS International ethical guidelines for health‐related research involving humans states that ‘health‐related research should form an integral part of disaster response’ and that, ‘widespread emergency use [of unproven interventions] with inadequate data collection about patient outcomes must therefore be avoided’ (Guideline 20). This position is defended against two lines of criticism that emerged during the 2014 Ebola outbreak. One holds that desperately ill patients have a moral right to try unvalidated medical interventions (UMIs) and that it (...) is therefore unethical to restrict access to UMIs to the clinical trial context. The second holds that clinical trials in contexts of high‐mortality diseases are morally suspect because equipoise does not exist between a standard of care that offers little prospect of clinical benefit and a UMI that might offer some clinical advantage. (shrink)

Background: The relationship between the nurse and the patient is understood as fundamental in nursing care. However, numerous challenges can be related to the provision of relationship-based nursing care. Challenges exist when nurses do not respond adequately to the patient’s appeal for help. Moreover, challenges arising in the nurse–patient relationship can be understood as more destructive demands from the patient to the nurse, thus begging inquiry into such a relationship. Research question: The overall aim is to explore (...) and argue the relevance of problematizing destructive demands evident within relationship-based nursing care. Research design: This theoretical article explores destructive demands based on the phenomenological philosophy of the Danish theologian and philosopher Knud E. Løgstrup and provides examples of nurses’ experiences in everyday nursing care. The examples are drawn from a Norwegian empirical study based on a hermeneutical research design. Participants and research context: Data consisted of qualitative interviews and qualitative follow-up interviews with 13 nurses with varying work experience within the primary and secondary somatic and psychiatric health service, from inside as well as outside institutions. Ethical consideration: The original empirical study was approved by the Norwegian Social Science Data Services. Information was given and consent was obtained from the participants. Findings: Two themes are described: strong impressions formed in meetings with patients and persistent concern over the burden of work and ability to endure. Discussion: Destructive demands related to relationship-based nursing care are discussed along two lines, first, by further elucidating nurses’ everyday experiences connected to destructive demands and, second, by highlighting the significance of including destructive demands within the relationship-based nursing care. Conclusion: Including destructive demands related to relationship-based nursing care is of particular significance in enabling the proposition that radical, one-sided demands are based on relationality, reciprocity and thereby expectations of life. In short, both the nurse and the patient are human beings in need of love and goodness. (shrink)

<b>Objectives:</b> To gather empirical data on how gender and educational level influence bioethical reasoning among medical students by analyzing their use of care versus justice arguments for reconciling a bioethical dilemma. <b>Setting:</b> University Departments of Medical Ethics, Social and Communication Psychology in Germany. Participants: First and fifth year medical students. Design and method: Multidisciplinary, empirical, 2-segment study of ethics in action: In intrapersonal Segment 1, the students were presented with a bioethical dilemma and then administered a 13-item questionnaire (...) to survey their individual preferences for care versus justice arguments in resolving the conflict. The survey questioned 6 justice, 6 care-related items and 1 socially critical item. Data were analysed by gender and year of medical school. In interpersonal Segment 2, the bioethical dilemma from Segment 1 was discussed in gender-mixed and gender-homogeneous groups. Coded transcripts were evaluated to identify prevalences in care versus justice reasoning. <b>Results:</b> Data on 462 medical students were evaluable (n=338 in Segment 1, n=168 in Segment 2, n=44 overlap). Gender and level of education had no effect on moral reasoning in intrapersonal Segment 1, but significantly affected reasoning in interpersonal Segment 2, where women significantly tended to use more care-orientated arguments. Justice arguments predominated the group discussions. <b>Conclusion:</b> Interpersonal contexts affect moral reasoning in medical students, probably by amplifying the socialisation relating to gender and educational level. Care orientation is associated with the female gender. Professional socialisation tends to reduce the diversity and richness of moral reasoning towards a more justice-weighted orientation. Medical ethics should teach both justice and care reasoning modes in order to broaden physicians' ability to reconcile bioethical dilemmas. (shrink)

Background: The ethics of care and justice represent two modes of moral reasoning that nurses use in solving real-life ethical dilemmas. Research aim: The present study investigated what types of dilemmas nurses encounter in everyday work and to what extent they use care versus justice reasoning to solve them. Research design: The study used a cross-sectional survey design. Participants reported a real-life ethical dilemma and its resolution through an online survey. Open-ended data were analysed with an (...) adjusted taxonomy of real-life moral dilemmas and moral orientations. Quantified data were analysed with statistical methods (χ2-test, analysis of variance). Participants and research context: Participants were 334 registered nurses and 177 practical nurses from four health and social care organisations in Finland. Ethical considerations: The study was approved by the Research Ethics Committee of Finnish Institute for Health and Welfare. Findings: Nurses reported six types of ethical dilemmas. Nurses used more care reasoning on the needs of others and conflicting demands dilemmas than on applying rules, social pressure and reacting to transgression dilemmas. Applying rules and needs of others dilemmas were the most common types of ethical dilemmas in both occupations. Practical nurses reported more non-ethical dilemmas than registered nurses did. Discussion: Ethical dilemmas of nurses are diverse, and the use of care and justice reasoning is differentiated according to the type of dilemma. Care reasoning dominates nurses’ ethical decision-making when responding to the needs of patients. Nurses use justice reasoning when they apply regimens, rules and procedures. In everyday ethics, care and justice reasoning complement each other. Conclusions: Highly regulated healthcare environments prefer rule-oriented justice reasoning that may supersede care reasoning in addressing patients’ situations. Focus on technical-professional expertise may further hamper nurses’ ethical decision-making. Nursing education and management should encourage nurses to use ethical concepts and values in their work. (shrink)

Social justice is a key value of social care. Yet, research on social justice in the context of related higher education is limited. This study uses qualitative interviews to focus on undergraduate social care students' (N = 19) approaches to social justice at the outset of their studies at Metropolia University of Applied Sciences in Finland, utilizing Bell's (2007) social justice framework. Please see Bell (2007) “Theoretical Foundations for Social Justice (...) Education.” In Teaching for Diversity and Social Justice, 2nd ed., edited by M. Adams, L. A. Bell, and P. Griffin, 1–14. New York: Routledge. Bell's (2007) framework includes social political and value elements as well as moral considerations on individuals' social and civic agency. As a result, most of the students indicated that they valued equality. Just over half of them stated that they are engaged in extra-curricular voluntary community service, mainly because it 'felt good'. Some of them exhibited political awareness, discussing voting and fair distribution of resources, but otherwise, few links between social justice and broader societal issues were made. Also, they seldomly addressed the broader community impact of their voluntary extracurricular community service, suggesting they might not yet fully comprehend their roles as purposeful social and civic change agents. The implications of this study are discussed in reference to developing these students' social justice-related knowledge, skills, values and agency. (shrink)

Contents: -- Preface and note on text structure -- Acknowledgements -- Introduction: the distinction of dignity -- Dignity, freedom and reason - from ancient greece to early modernity -- The sense of dignity in moral philosophy ¿ from the ethical intuitionists to the irrationalists -- Marx's critique of morality - natural law, the state and citizenship -- Classical sociology's regard for human dignity -- The human face of dignity reflected in phenomenology and existentialism -- Fresh terms for dignity attending the (...) frankfurt school (both 'old' and 'young') -- Notes sampling research and practice: making dignity work; making dignity care -- The slighting of dignity - the critics charter -- Conclusion: after the recognition of dignity. (shrink)

This article presents the ethical implications for social science research emerging from our study on interpersonal communication after a laryngectomy. By tracing the evolution of our approach through specific research experiences and participant feedback, we provide empirical support for a flexible, multidimensional, and relational understanding of key ethical concepts, such as vulnerability and the researcher-participant relationship. Our approach has shifted from institutionally imposed rigid categorizations and somewhat stereotypical treatment of both the research group and the researcher-participant (...) relationship to an emphasis on building relationships founded on mutual care and rapport. We argue that this revised perspective fosters ethical collaboration that is beneficial and secure for all parties involved, and we offer practical examples of its implementation in research practice. (shrink)

In order to practice effectively in today's complex and changing environment, social workers need to have an understanding of how contemporary cultural and philosophical concepts relate to the people they work with and the fields they practice in. Exploring the ideas of philosophers, including Nietzsche, Gadamer, Taylor, Adorno, MacIntyre, Zizek and Derrida, this text demonstrates their relevance to social work practice and presents new approaches and frameworks to understanding social change. Key Debates in Social Work and (...) Philosophyintroduces a range of concerns central to social work and social care, with chapters looking at questions such as: - What is the 'self'? - How are communities formed? - Why is 'choice' important? - Are certain rights really applicable to all humans? - What are the political and ethical implications of documenting your practice? - What does it mean to be a professional social worker? Each chapter focuses on a particular area of dispute, presenting the relevant philosophical theories, and considering how relevant social work examples and research can be used to further inform theoretical debate, and includes questions to prompt discussion and reflection. The only book to examine the philosophical ideas that underlie and inform contemporary issues for social work and social care practitioners, this is a useful resource for those studying social work theory, policy and practice. (shrink)

Previous research has focused on the relation between social class and prosocial behavior. However, this relation is yet unclear. In this work, we shed light on this issue by considering the effect of the level of empathy and the social class of the recipient of help on two types of prosociality, namely helping and caring. In one experimental study, we found that for high-class participants, empathy had a positive effect on helping, regardless of the recipient’s social (...) class. However, empathy had no effect for low-class participants. When it comes to caring, empathy had a positive effect for both high and low-class participants, but only when the recipient of help belonged to the same social class. This highlights that empathy by itself is not sufficient to promote cooperative relations and that the social class of the recipient of help should be taken into account to shed light on this issue. (shrink)

In Justice, Care, and Value Thomas Randall advances the radical potential of care ethics as a distinct (and preferable) theory of distributive justice. Advancing the care ethical literature this book defends a vision of society that can best enable such relations to flourish. Specifically, Randall uses breakthrough arguments to propose a values-driven theory of care ethics that identifies good caring relations through classifying the values of care. He argues that such a theory gives us unique (...) and meaningful solutions to contemporary questions and encourages us to think about distributive justice across personal, political, global, and intergenerational domains. Through this the book makes significant strides to engage care ethics with the broader moral and political philosophy literature. Topical and interdisciplinary, Randall demonstrates that care ethics has the conceptual resources to ground distributive theories of socialism, territorial and natural resource rights, obligations to future generations, and historic redress. The book will be of great interest for academics, researchers, and students in feminist philosophy, but also in liberalism, global and intergenerational theories of justice, and political economy. (shrink)

This paper explores the impact of the Human Rights Act 1998 on decision making in adult social care in England and Wales. It focuses on a review of the Act by the government in June 2006 and subsequent new guidance on implementation addressed to policy makers, managers and practitioners. The meaning of ?rights? in contemporary legal and social theory is considered and the potential of human rights law to improve the experiences of service users is evaluated in (...) the light of recent research findings and proposed policy changes. (shrink)

Joan Tronto defines care by three activities: maintaining, continuing, and repairing. These activities give care a maintenance quality, which is problematic given that caring often takes place within contexts of inequality and domination. Empirical research with paid support staff and people with intellectual and developmental disabilities (IDD) illustrate these problems: care practices tend to reinforce the social exclusion of people with IDD, particularly for people with challenging behavior. Yet, support workers’ care practices can facilitate (...) a better quality of life for people with IDD. This improved style of support maps onto Tronto’s fifth phase of care, caring with, which hinges practices of care on democratic principles of justice, equality, and freedom. As such, democratic care requires activities that Tronto excludes from care, including creativity, disruption, and pleasure. I use empirical research from the field of IDD to show how support workers and people with IDD practice creative, disruptive, and playful care to challenge persistent forms of exclusion, inequality, and stigma. (shrink)

Social work supervision is a forum in which social workers and supervisors have the opportunity to explore ethics within their practice. It is also where social workers experience ongoing learning and development regarding ethics. This article is a selective review of social work supervision and ethics literature. Key areas identified are: 1) the role of supervision in the monitoring and development of ethical social work practice; 2) supervisors’ knowledge and application of codes of ethics, ethical (...) theories, principles and ethical decision-making models; 3) ethical supervisory relationships, processes and practices. A lack of research evidence was identified regarding the application of ethics within supervision and in relation to the interactional process of ethical exploration, inquiry and dialogue within sessions. Considering this lack of evidence, we propose that ethics be integrated throughout the supervision process through the development of care ethics culture, ethical sensitivity and ethical dialogue. The article concludes with recommendations about bringing ethics to the forefront in supervision. Recommendations are also made concerning further research pertaining to the monitoring and development of ethical social work practice through supervision, supervisors’ ethics knowledge, the interactional process of ethical supervisory practice with supervisees and the influence of organisational culture upon ethics and supervision. (shrink)

Symbolic violence may not be a desirable theory to apply to public schooling?its structuralist limitations render it deterministic, lacking in human agency, and unpalatable to researchers and educators who see schools as viable and productive sites of social transformation. Perhaps for these reasons, it seems little has been written about symbolic violence in schools, and what has been written tends to focus primarily on the symbolic, institutionalized violence imparted by schools and teachers upon students. In this article, I offer (...) a shift in these perspectives. I present symbolic violence as a productive analytical tool in identifying modes of resistance to specific damaging effects of schooling institutions. I also illustrate how symbolic violence victimizes one particularly caring teacher, rendering her compliant in her own victimization, without voice to accurately name her struggles, and?because of her ethic of care?complicit in reproducing damaging institutionalizing practices. Using ethnographic data, I explore symbolic violence via one teacher's reflective, critical narratives. I draw upon the tenets of dialogicality in language to help make more visible the often intangible elements of symbolic violence. And at various points in the article, I discuss the implications of engaging an analytic that ultimately runs counter to my own epistemology, turning to Maxine Greene for insight in the struggle. (shrink)

Dilemma discussions have been proven to be one of the most effective methods to enhance students’ moral reasoning in ethics education. Dilemma discussions are increasingly arranged online, but research on the topic has remained sparse, especially in the context of continuing professional education. The aim of the present paper was to develop a method of dilemma discussions for professional ethics. The method was based on asynchronous discussions in small groups. Health and social care students raised work-related dilemmas (...) from their experiences and discussed them in terms of professional values, ethical guidelines and theories. Participants in this quasi-experimental study were 87 first-term graduate students at a Finnish university of applied sciences. Health and social care students in two consecutive ethics courses constituted two experiment groups, whereas health and social care students and business students in other programmes served as control groups. Students filled in a Defining Issues Test (DIT2) at the beginning of their studies and three months apart. Statically significant increase in moral reasoning was evidenced for experiment group 2, when discussion groups were purportedly composed to maximise differences in initial levels of moral reasoning. Findings suggest that online dilemma discussions can advance students’ moral reasoning development, especially when students’ exposure to higher-level arguments is ensured through complementary means, such as instructions, examples and plenary discussions. Online real-life dilemma discussions may also serve other important goals of ethics education, especially acquiring ethical concepts, and they can promote other components of ethical decision making: ethical sensitivity and motivation, and acquisition of implementation skills. (shrink)

A growing body of research can be found in which roboticists are designing for reciprocity as a key construct for successful human–robot interaction (HRI). Given the centrality of reciprocity as a component for our moral lives (for moral development and maintaining the just society), this paper confronts the possibility of what things would look like if the benchmark to achieve perceived reciprocity were accomplished. Through an analysis of the value of reciprocity from the care ethics tradition the richness (...) of reciprocity as an inherent value is revealed: on the micro-level, as mutual care for immediate care givers, and on the macro-level, as foundational for a just society. Taking this understanding of reciprocity into consideration, it becomes clear that HRI cannot achieve this bidirectional value of reciprocity; a robot must deceive users into believing it is capable of reciprocating to humans or is deserving of reciprocation from humans. Moreover, on the macro-level, designing social robots for reciprocity threatens the ability and willingness to reciprocate to human care workers across society. Because of these concerns, I suggest re-thinking the goals of reciprocity in social robotics. Designing for reciprocity in social robotics should be dedicated to the design of robots to enhance the ability to mutually care for those that provide us with care, as opposed to designing for reciprocity between human and robot. (shrink)

This Research Topic focuses on both strengths and weaknesses of social innovation, technological innovation, and health innovation that are increasingly recognized as crucial concepts related to the formulation of responses to the social, health, and environmental challenges. Goals of this Research Topic: (1) to identify and share the best recent practices and innovations related to social, environmental and health policies; (2) to debate on relevant governance modes, management tools as well as evaluation and impact assessment (...) techniques; (3) to discuss dilemmas in the fields of management, financing, designing, implementing, testing, and maintaining the sustainability of innovative models of delivering social, health and care services; and (4) to recognize and analyze social, technological and health innovation that has emerged or has been scaled-up to respond to crisis situations, for example, a pandemic of the COVID-19 coronavirus disease. (shrink)

Kidfluencing, a social media business in which children serve as primary influencers of audience opinions or behavior, is a rapidly growing entrepreneurial phenomenon where parents build enterprises around the likability and antics of their children. Proponents argue that kidfluencing is simply monetizing the existing antics of kids, critics argue that it is child labor. We explore the ethical implications of kidfluencing through the abductive lens of four leading kidfluencer cases—Ryan’s World, Vlad and Nicki, Ninja Kidz, and The Bucket List (...) Family—in light of the United Nations Convention on the Rights of the Child. Through a comparative case analysis of these four highly successful kidfluencing channels, we demonstrate both the ethical challenges as well as the trade-offs between rewards and rights risks within kidfluencing. We develop a model of five fundamental threats to the rights and freedoms of children involved in social media influencing, proposing a framework by which parents, platforms, and policy-makers can assess and regulate this industry. In so doing, we make contributions to the literatures of child labor and the ethics of care. (shrink)

This research aims to monitor the current situation of confinement in Spanish society motivated by COVID-19 crisis. For this, a study of its socio-family, psychological and educational impact is conducted. The sample (N= 165 families, 89.1% nuclear families with children living in the same household and 20.5% with a relative in a risk group) comes from the Aragonese region (Spain). The instruments used are: Beck-II Depression Inventory (BDI-II); Baron-Cohen and Wheelwright’s Empathy Quotient (EQ) with its cognitive empathy subscale, as (...) well as an ad-hoc questionnaire, reviewed by a panel of experts, to learn about socio-personal, family and housing conditions, use of technology, involvement in school tasks and household, and working condition. The multiple regression analysis results show that the anxiety derived from the current situation is explained in 23.1% (p< 0.001) by the variables: gender (t = -2.31,p= 0.022), level of Internet consumption (t = 2.139,p= 0.034), increase of family conflicts (t = 2.980,p= 0.003) and help with school tasks (t = 2.980,p= 0.040). On the other hand, cognitive empathy is explained in 24.6% (p< 0.001) by the variables: gender (t = -4.690,p< 0.001) and mother’s hours of teleworking (t = 2.101,p= 0.037). All this leads us to conclusions related to preventive systems of social, psychological, and educational aspects to better serve families. These conclusions can be also be transferred to the future with an inclusive care to family settings from those three parameters. (shrink)

Rare genetic diseases collectively impact millions of individuals in the United States. These patients and their families share many challenges including delayed diagnosis, lack of knowledgeable providers, and limited economic incentives to develop new therapies for small patient groups. As such, rare disease patients and families often must rely on advocacy, including both self-advocacy to access clinical care and public advocacy to advance research. However, these demands raise serious concerns for equity, as both care and research (...) for a given disease can depend on the education, financial resources, and social capital available to the patients in a given community. In this article, we utilize three case examples to illustrate ethical challenges at the intersection of rare diseases, advocacy and justice, including how reliance on advocacy in rare disease may drive unintended consequences for equity. We conclude with a discussion of opportunities for diverse stakeholders to begin to address these challenges. (shrink)

Although various scholars underscore the importance of innovating responsibly in view of today's societal challenges, less attention has been paid to the entrepreneurial skillset, that is, the range of individual skills and organizational capabilities, that innovation-based organizations mobilize to deliver new responsible products and services. This paper thus explores the relationships between the entrepreneurial skillsets of 16 Canadian and Brazilian for-profit and not-for-profit organizations producing Responsible Innovations in Health (RIH) and their degree of responsibility. Our mixed methods study includes interviews (...) with entrepreneurs (n = 23) and fieldnotes as well as quantitative results from the RIH Assessment Tool. Our findings identify four skillset orientations—Technical, Technical + Business, Social, and Social + Business—that not only reflect (co)founders' training and entrepreneurial motivations but also a proclivity toward the consolidation of either “Technical” or “Social” skills and capabilities. Such consolidation is made possible by recruiting high-level executives with diverse backgrounds or by tapping on external knowledge sources (e.g., boards of directors, incubators, or volunteers). As five enterprises had no formal business skills, patterns associated to their overall RIH score (ranging from 1 to 5) reveal intriguing results. Organizations with a Social + Business skillset have a slightly lower RIH score (4.1) than those with a Social skillet (4.4) and those with a Technical + Business skillset have a slightly higher score (3.5) than those with a Technical skillset (3.0). The presence of business skills thus appears to mediate the relationship between entrepreneurial skillsets and the degree of responsibility, which may be linked to the distinct roles of ordinary (“doing things right”) and dynamic capabilities (“doing the right things”). These exploratory findings have scholarly and practical implications. First, the tensions and synergies characterizing responsible value creation should be approached by examining the complementary skills and capabilities that need to be assembled and consolidated. Second, the eight cases with a Social + Business skillset clarify the unique capabilities needed to produce highly responsible health innovations. Third, entrepreneurs with a scientific or engineering background should recognize that a Technical skillset is not enough. Fourth, recognizing that “falling in love with the cause” of RIH is not sufficient, investors and boards of directors should adequately support responsible entrepreneurs towards the proper orchestration of skills and capabilities that can reconcile economic and social goals. (shrink)

This insightful book uniquely charts the events, experiences and challenges faced by teachers during and beyond the COVID-19 pandemic including periods of national lockdowns and school closures. Research-based and evidence informed, this key title explores the multiple media outputs created by teachers in a variety of different socio-economic contexts. The authors reflect on their stories through a series of themed analyses, as well as describe and discuss key issues related to the enactment of teacher professionalism in challenging times. With (...) fascinating vignettes and interview extracts that reinforce the idea that teachers can manage rather than survive, this book unveils a strong sense of moral purpose, professional identity, commitment, care, and resilience. It will be of interest to teachers, headteachers and teacher educators internationally. (shrink)