Video surveillance is an omnipresent phenomenon in today’s metropolitan life. Mainly intended to solve crimes, to prevent them by realtime-monitoring or simply as a deterrent, video surveillance has also become interesting in economical contexts; e.g. to create customer profiles and analyse patterns of their shopping behaviour. The extensive use of video surveillance is challenged by legal claims and societal norms like not putting everybody under generalised suspicion or not recording people without their consent. In this work we propose a technological (...) solution to balance the positive and negative effects of video surveillance. With automatic image recognition algorithms on the rise, we suggest to use that technology to not just automatically identify people but blacken their images. This blackening is done with a cryptographic procedure allowing to revoke it with an appropriate key. Many of the legal and ethical objections to video surveillance could thereby be accommodated. In commercial scenarios, the operator of a customer profiling program could offer enticements for voluntarily renouncing one’s anonymity. Customers could e.g. wear a small infrared LED to signal their agreement to being tracked. After explaining the implementation details, this work outlines a multidisciplinary discussion incorporating an economic, ethical and legal viewpoint. (shrink)

Anonymising technologies are cyber-tools that protect people from online surveillance, hiding who they are, what information they have stored and what websites they are looking at. Whether it is anonymising online activity through ‘TOR’ and its onion routing, 256-bit encryption on communications sent or smart phone auto-deletes, the user’s identity and activity is protected from the watchful eyes of the intelligence community. This represents a clear challenge to intelligence actors as it prevents them access to information that many would argue (...) plays a vital part in locating and preventing threats from being realised. Moreover, such technology offers more than ordinary information protections as it erects ‘warrant-proof’ spaces, technological black boxes that no matter what some authority might deem as being legitimately searchable is protected to the extent that there are very limited or non-existent means of forcing oneself in. However, it will be argued here that not only is using such anonymising technology and its extra layer of protection people’s right, but that it is ethically mandatory. That is, due to the en masse surveillance—from both governments and corporations—coupled with people’s limited awareness and ability to comprehend such data collections, anonymising technology should be built into the fabric of cyberspace to provide a minimal set of protections over people’s information, and in doing so force the intelligence community to develop more targeted forms of data collection. (shrink)

Seroprevalence monitoring of HIV in pregnant women by anonymised unlinked testing has been widely adopted in the UK and other countries. The scientific rationale is to eliminate participation and selection bias. The ethical justification is that the public good outweighs any harm to individuals. The assumption has been that individuals have had their autonomy respected by the offer of informed consent. In the light of new scientific evidence, it is doubtful that the public good is best served by the continuation (...) of anonymously testing women receiving antenatal care. It is submitted that it is no longer ethical for health professionals to refrain from informing pregnant women of the benefits of voluntary named testing, or to request their consent to anonymised testing. The legal and moral concept of duty of care is examined, and the abrogation of this duty through anonymisation is explained. (shrink)

“Anonymised screening is a research tool to inform policy and practice and individual decision making, but is not a tool to identify those at risk that could directly benefit from intervention.”1The assumption that the information acquired will be used to prioritise health care resources may prove false. A government, after weighing up the costs and benefits, may choose not to adopt appropriate interventions. Or, even if a policy is proposed,, it may not be adhered to. Even as I write, antenatal (...) clinics that serve populations with the highest concentration of refugees from sub-Saharan Africa, and therefore of those at risk, still do not have a policy of universal screening.Anonymised screening is a form of non-therapeutic research, and should comply with the Helsinki Declaration on Non-therapeutic Research involving Human Subjects. I have already argued that physicians who undertake anonymised screening have abrogated their duty, as outlined in article one, “... to remain the protector of the life and health of that person on whom biomedical research is being carried out”.2In addition, article four states: “In research on man, the interest of science and society should never take precedence over considerations related to the wellbeing of the subject.”2The desire for an outcome—perfect epidemiological figures—should not override the ethics of the process whereby this is achieved. The …. (shrink)

There is significant research value in the secondary use of surplus human tissue which has been removed during clinical care and is stored in diagnostic archives. However, this value is limited without access to information about the person from whom the tissue was removed. As the research value of surplus tissue is often not realised until after the patient’s episode of care, it is often the case that no consent has been given for any surplus tissue to be used for (...) research purposes. The Human Tissue Act 2004 does permit research use of surplus tissue without consent, but the researcher must not be in possession of information which could identify the person from whom the tissue was removed. Due to the commonly applied ‘consent or anonymise’ approach, linking tissue and data is challenging and full anonymisation would likely render much research on surplus tissue ineffectual. This article suggests that in recognising the value in surplus tissue linked with information about the person, a ‘share and protect’ approach which considers safeguards other than anonymisation, where obtaining consent for research use would not be feasible, would better balance the public benefit of health research with the protection of individual rights and interests than a requirement for either consent or anonymisation. (shrink)

Dr de Zulueta articulates some important and commonly held concerns about the anonymised screening programme for HIV in pregnant women, which is one of a number of such programmes that are current. However, in my view, many of these concerns reflect a failure to understand two key distinctions.In both these regards, there is a danger of putting up a “straw man” for challenge. In this commentary, I wish to pick up some of these issues to help to resolve the apparent (...) ethical tensions that Dr de Zulueta has set out.Firstly, the unlinked seroprevalence surveillance programmes, including that on pregnant women, comprise research studies that are designed to inform policy and practice, as well as individual decision making. They are not screening for the purpose of clinical care. The anonymisation is a procedural research tool, which enables the studies to be done in a way that does not undermine consent or individual autonomy. The ethical standards and duties expected of professionals are thus, in this specific regard, those that relate to the conduct of clinical research. That research is evidently designed to improve the quality of clinical care as a result of the information and insight gained. The duty of care is to apply the results of properly conducted and valid research in order to improve clinical practice on behalf of the individuals receiving care, in this case the mother and unborn child. The research conducted, in this case by a particular form of screening procedure, is not the same as a screening procedure done for clinical purposes to identify individuals who could benefit from an intervention. The ethical debate must therefore focus on the purpose in applying the procedure, not on the procedure itself, regardless of intent.Secondly, it is vital to distinguish, in debating such …. (shrink)

An Institute of Medical Ethics working party supports the view that explicit permission should normally be sought in the case of testing for HIV antibody. It discusses this in relation to anonymised HIV testing for epidemiological purposes, concluding that this is to be welcomed, given certain safeguards. It next argues that pregnant women may have a greater and more immediate need than others to know their HIV status. It concludes that this need does not justify testing them without their permission, (...) but can be met by voluntary diagnostic testing on an 'opting-out' basis, supported by adequate briefing. (shrink)

An Institute of Medical Ethics working party supports the view that explicit permission should normally be sought in the case of testing for HIV antibody. It discusses this in relation to anonymised HIV testing for epidemiological purposes, concluding that this is to be welcomed, given certain safeguards. It next argues that pregnant women may have a greater and more immediate need than others to know their HIV status. It concludes that this need does not justify testing them without their permission, (...) but can be met by voluntary diagnostic testing on an 'opting-out' basis, supported by adequate briefing. (shrink)

Dans les cinquante dernières années, les progrès de l’informatisation ont renforcé l’accessibilité de la jurisprudence via des bases de données juridiques, maintenant concurrencées par des plates-formes de diffusion du droit sur internet. La loi pour une République numérique du 7 octobre 2016 a prévu la généralisation de la diffusion des décisions des juges du fond au titre du processus d’ open data. Toutefois les obstacles sont nombreux : conceptuels, techniques, matériels. D’abord, un glissement s’est opéré d’une problématique d’anonymisation des (...) décisions juridictionnelles vers celle de leur pseudonymisation. Ensuite, la pseudonymisation pourrait constituer un frein au mouvement d’ open data judiciaire, du fait de la lourdeur technique nécessaire pour la réaliser. Juridiquement, sa mise en œuvre s’avère de surcroît délicate. Le renvoi législatif à la protection de la vie privée doit se combiner avec l’application du droit des données personnelles, au titre duquel il faut limiter le risque de réidentification des justiciables. Enfin, matériellement le curseur de la pseudonymisation est malaisé à placer. Quelles indications convient-il de masquer : celles relatives aux parties, ou plus largement aux personnes citées et professionnels du droit impliqués? (shrink)

The future of health research will be characterised by three continuing trends: rising demand for health data; increasing impracticability of obtaining specific consent for secondary research; and decreasing capacity to effectively anonymise data. In this context, governments, clinicians and the research community must demonstrate that they can be responsible stewards of health data. IRBs and RECs sit at heart of this process because in many jurisdictions they have the capacity to grant consent waivers when research is judged to be of (...) particular value. However, several different terms are used to refer to this value, indicating a lack of conceptual clarity regarding the appropriate test for access to health data for research without consent. In this paper we do three things. First we describe the current confusion and instability in terminology relating to public interest in the context of consent waivers. Second we argue for harmonisation of terminology on the grounds of clarity, transparency and consistency. Third we argue that the term ‘public interest’ best reflects the normative work required to justify consent waivers because it is the broadest of the competing terms. ‘Public interest’ contains within its scope positive and negative implications of a study, as well as welfare, justice and rights considerations. In making this argument, we explain the normative basis for consent waivers, and provide a starting place for further discussion about the precise conditions in which a given study can be said to advance the public interest. Ipsos MORI study found that: … the public would be broadly happy with administrative data linking for research projects provided Those projects have social value, broadly defined. Data are de-identified. Data are kept secure. Businesses are not able to access the data for profit. (shrink)

Qualitative fieldwork research on sensitive topics sometimes requires that interviewees be granted confidentiality and anonymity. When qualitative researchers later publish their findings, they must ensure that any statements obtained during fieldwork interviews cannot be traced back to the interviewees. Given these protections to interviewees, the integrity of the published findings cannot usually be verified or replicated by third parties, and the scholarly community must trust the word of qualitative researchers when they publish their results. This trust is fundamentally abused, however, (...) when researchers publish articles reporting qualitative fieldwork data that they never collected. Using only publicly available information, I argue that a 2017 article in an Elsevier foreign policy and international relations journal presents anonymised fieldwork interviews that could not have occurred as described. As an exercise in post-publication peer review (PPPR), this paper examines the evidence that calls into question the reliability of the putative fieldwork quotations. I show further that the 2017 article is not a unique case. The anonymity and confidentiality protections common in some areas of research create an ethical problem: the protections necessary for obtaining research data can be used as a cover to hide substandard research practices as well as research misconduct. (shrink)

This paper indicates how continental philosophy may contribute to a diagnostics of contemporary life sciences research, as part of a “diagnostics of the present”. First, I describe various options for an oblique reading of emerging scientific discourse, bent on uncovering the basic “philosophemes” of science. Subsequently, I outline a number of radical transformations occurring both at the object-pole and at the subject-pole of the current knowledge relationship, namely the technification of the object and the anonymisation or collectivisation of the (...) subject, under the sway of automation, ICT and big machines. Finally, I further elaborate the specificity of the oblique perspective with the help of Lacan’s theorem of the four discourses. Philosophical reflections on contemporary life sciences concur neither with a Master’s discourse, nor with university discourse, nor with what Lacan refers to as hysterical discourse, but rather with the discourse of the analyst, listening with evenly-poised attention to the scientific files in order to bring to the fore the cupido sciendi which both inspires and disrupts contemporary life sciences discourse. (shrink)

The paper problematises the reliability and ethics of using social media data, such as sourced from Twitter or Instagram, to carry out health-related research. As in many other domains, the opportunity to mine social media for information has been hailed as transformative for research on well-being and disease. Considerations around the fairness, responsibilities and accountabilities relating to using such data have often been set aside, on the understanding that as long as data were anonymised, no real ethical or scientific issue (...) would arise. We first counter this perception by emphasising that the use of social media data in health research can yield problematic and unethical results. We then provide a conceptualisation of methodological data fairness that can complement data management principles such as FAIR by enhancing the actionability of social media data for future research. We highlight the forms that methodological data fairness can take at different stages of the research process and identify practical steps through which researchers can ensure that their practices and outcomes are scientifically sound as well as fair to society at large. We conclude that making research data fair as well as FAIR is inextricably linked to concerns around the adequacy of data practices. The failure to act on those concerns raises serious ethical, methodological and epistemic issues with the knowledge and evidence that are being produced. (shrink)

Background:At a time when British nursing has been under scrutiny for an apparent lack of compassion in education and practice, this paper based offers a perspective on the notions of vocation and altruism in nursing.Objectives:To understand the vocational and altruistic motivations of nurses through the application of Pierre Bourdieu's concepts of ‘symbolic capital’, ‘field’ and ‘habitus’ through a long interview with nurse respondents.Research design:A reflexive qualitative study was undertaken using the long interview. A thematic analysis of the data, using a (...) qualitative data software package for analysis, was undertaken. The ideas of Pierre Bourdieu (Habitus, Capital and Field) were used to analyse and explain the content of community nurses' ‘talk’.Participants:Twelve Community Nurses working in a variety of local primary care settings volunteered to participate in the study. It was a self-selecting convenience sample of nurses responding to an invitation to be interviewed.Research context:A study in support of a doctoral thesis conducted within NHS primary care settings with registered nurses.Ethical considerations:The key considerations for this study were to be mindful of the possibility of emotional harm or distress being caused to the respondents during the retelling of their experiences. It was also essential to ensure that the locations or names of patients or staff (if discussed) were anonymised. Ethical approval was sought and granted by both the Local NHS Primary Care and the University Ethics committees before the study commenced.Findings:The nurse respondents had highly individual and at times contradictory views on their motivations to nurse including their views on vocation and altruism in nursing careers.Discussion:Bourdieu's ideas apply well to the nursing context and provided a useful theoretical framework to explore the social and cultural influences on nursing careers. Gender is important consideration in all aspects of nursing but class and educational experience is an important dimension in the stories nurses tell.Conclusion:The culturally determined experiences of these nurses in practice offer an authentic and realistic insight into the complex motives and predispositions of community nurses. This paper argues that nurse motivations whether vocational or altruistic, are better understood as culturally, rather than spiritually, driven. (shrink)

Methodological innovations have a special status in disciplinary histories, because they can be widely adopted and anonymised. In the 1950s, this occurred to Georges Laplace’s innovative use of 3-dimensional metric Cartesian coordinate system to record the positions of archaeological objects. This paper proposes a conceptual and social history of this process, with a focus on its spatial context, the Pyrenean region (Spain, Basque Country, and France). Main results of this research based on archives, publications, and bibliometric data, include: 1) a (...) critical discussion of the notions concerning authorship of such methodological innovations; 2) a presentation of the lesser-known aspects of Laplace’s method, showing its contribution to the abstraction and formalisation of archaeological observations and data recording; and 3) the identification of an international Pyrenean intellectual lineage of innovation regarding stratigraphy and excavation methods, from the late 19th century to the early 21th century. (shrink)

What should we do about children and young people who want to be tested for incurable, adult onset, genetic disorders? In particular, what should a general practitioner do if he or she believes the young person is competent to decide, but the regional genetics unit refuses to test anyone under 18? In this article I discuss such a case (drawn from actual practice, but anonymised), and consider the arguments for and against allowing the young person to be tested in terms (...) of good practice, case and statute law, empirical evidence, and ethics. (shrink)

Objective: Symptom improvement is often examined as an indicator of a good outcome of accessing mental health services. However, there is little evidence of whether symptom improvement is associated with other indicators of a good outcome, such as a mutual agreement to end treatment. The aim of this study was to examine whether young people accessing mental health services who meaningfully improved were more likely to mutually agree to end treatment.Methods: Multilevel multinomial regression analysis controlling for age, gender, ethnicity, and (...) referral source was conducted on N = 8,995 episodes of care [Female = 5,469, 61%; meanAge = 13.66 years] using anonymised administrative data from young people's mental health services.Results: Compared to young people with no change in mental health difficulties, those showing positive meaningful changes in mental health difficulties were less likely to have case closure due to non-mutual agreement. Similarly, they were less likely to transfer or end treatment for other reasons than by case closure due to mutual agreement.Conclusion: The findings suggest that young people accessing mental health services whose symptoms meaningfully improve are more likely to mutually agree to end treatment, adding to the evidence that symptom improvement may be appropriate to examine as an indicator of a good outcome of accessing mental health services. (shrink)

Recent large-scale personal data loss incidents highlighted the need for public bodies to more securely handle confidential data. We surveyed trainees from all specialties in the Welsh Deanery for their knowledge and practice. All registered trainees were invited to participate in an online anonymised survey. There were 880 completed and non-duplicated responses (52.9% response rate). Responses were analysed using Microsoft Access. Over 40% (388/880 (44.1%)) did not use formal guidelines on storage or disposal of confidential data. The majority appeared to (...) dispose of confidential paper documents securely, that is, using shredders and white shredder bags. However, there were significant numbers of unmarked responses. Clinical documents, such as theatre lists, were taken home by 281/880 (31.9%) of trainees. The majority secured their computers (569/871 (65.3%)) by either not keeping patient identifiable data on them or using encryption. However, 302/871 (34.7%) did not adequately secure their computers. The surgical and anaesthetic specialties were least aware of formal confidentiality guidelines (95/178 (53.4%)) and 52/102 (51.0%) respectively) and least secured their computers (106/178 (59.6%) and 63/102 (61.8%) respectively). Education is needed to improve knowledge and practice of confidential data handling. This may be delivered through workshops during induction programmes or as part of European Computer Driving Licence (ECDL) modules. Training is especially indicated for the surgical and anaesthetic specialties. (shrink)

The Liverpool Care Pathway is intended as a palliative care regime at the end of life. Even its critics agree that certain of its recommendations may be useful and appropriate. Additionally, critics are aware that there are occasions when death may be a foreseen side effect of perfectly licit palliation whose primary ends are not homicidal at all. It is evident that treatment may be over-expensive, over-burdensome or simply futile. There is no suggestion that critics of the Pathway adhere irrationally (...) to what is known in medical ethics as the error of vitalism, the commitment to excessive, extraordinary or futile treatment, or over-burdensome care at the end of life. However, to ask whether treatment is futile, over-burdensome or over-expensive is very different to the discriminatory question about the futility, burden or expense of a frail and vulnerable patient. The sedation-dehydration aspect of the Pathway attracts much proper opposition. Doctors and families have found that those on the Pathway recovered when they intervened to take the patient off it. Senior medics have stepped forward, in the face of managerial opposition to argue that it is often impossible to know with certainty whether a person is imminently dying. One problem with the Pathway is that where a patient is misdiagnosed as terminal, the combination of morphine and dehydration has a self-fulfilling character and is likely to undermine a patient’s capacity. Persistent dehydration of even fit and healthy sedated patients will kill them. This was the difficulty highlighted by concerned medical professionals many years ago. The independent inquiry ordered in response to Freedom of Information Act requests performed in 2012 demonstrating a staggering increase in the number of people dying on the Pathway once it was financially incentivised needs to ensure certain investigations take place. What is needed, however, is not a whitewash but an independent inquiry with all interests declared and data sets interrogated and collated. These will cover a time-series medical history of each anonymised patient on the Pathway, duration until death, information about interventions provided during the period, monthly raw data from each trust, hospice or care home, medical histories, removals from the Pathway, information about journals that were corrected once a patient recovered, demographic data, location information and an audit trail of all data management. (shrink)

BackgroundA growing number of studies show the potential of loyalty card data for use in health research. However, research into public perceptions of using this data is limited. This study aimed to investigate public attitudes towards donating loyalty card data for academic health research, and the safeguards the public would want to see implemented. The way in which participant attitudes varied according to whether loyalty card data would be used for either cancer or COVID-19 research was also examined.MethodsParticipants were recruited (...) via Prolific Academic to take part in semi-structured telephone interviews, with questions focused on data sharing related to either COVID-19 or ovarian/bowel cancer as the proposed health condition to be researched. Content analysis was used to identify sub-themes corresponding to the two a priori themes, attitudes and safeguards.ResultsParticipant attitudes were found to fall into two categories, either rational or emotional. Under rational, most participants were in favour of sharing loyalty card data. Support of health research was seen as an important reason to donate such data, with loyalty card logs being considered as already within the public domain. With increased understanding of research purpose, participants expressed higher willingness to donate data. Within the emotional category, participants shared fears about revealing location information and of third parties obtaining their data. With regards to safeguards, participants described the importance of anonymisation and the level of data detail; the control, convenience and choice they desired in sharing data; and the need for transparency and data security. The change in hypothetical purpose of the data sharing, from Covid-19 to cancer research, had no impact on participants’ decision to donate, although did affect their understanding of how loyalty card data could be used.ConclusionsBased on interviews with the public, this study contributes recommendations for those researchers and the wider policy community seeking to obtain loyalty card data for health research. Whilst participants were largely in favour of donating loyalty card data for academic health research, information, choice and appropriate safeguards are all exposed as prerequisites upon which decisions are made. (shrink)

Human Biological Materials are an invaluable resource in biomedical research. Objective To determine if researchers and a Research Ethics Committee at a South African institution addressed ethical issues pertaining to HBMs in collaborative research with developed countries. Study Design Ethically approved retrospective cross-sectional descriptive audit. Results Of the 1305 protocols audited, 151 fulfilled the study's inclusion criteria. Compared to other developed countries, a majority of sponsors were from the USA . The principle investigators in all 151 protocols informed the REC (...) of their intent to store HBMs. Only 132 protocols informed research participants . In 148 protocols informed consent was obtained from research participants, 116 protocols solicited broad consent compared to specific consent [p < 0.0001]. In 105 cases a code was used to maintain confidentiality. HBMs were anonymised in 14 protocols [p < 0.0001]. More protocols informed the REC than the research participants that HBMs would be exported . Export permits and Material Transfer Agreements were not available in 109 and 143 protocols, respectively. Conclusions Researchers and the REC did not adequately address the inter-related ethical and regulatory issues pertaining to HBMs. There was a lack of congruence between the ethical guidelines of developed countries and their actions which are central to the access to HBMs in collaborative research. HBMs may be leaving South Africa without EPs and MTAs during the process of international collaborative research. (shrink)

Human Biological Materials (HBMs) are an invaluable resource in biomedical research.ObjectiveTo determine if researchers and a Research Ethics Committee (REC) at a South African institution addressed ethical issues pertaining to HBMs in collaborative research with developed countries.Study DesignEthically approved retrospective cross‐sectional descriptive audit.ResultsOf the 1305 protocols audited, 151 (11.57%) fulfilled the study's inclusion criteria. Compared to other developed countries, a majority of sponsors (90) were from the USA (p = 0.0001). The principle investigators (PIs) in all 151 protocols informed the (...) REC of their intent to store HBMs. Only 132 protocols informed research participants (P < 0.0001). In 148 protocols informed consent (IC) was obtained from research participants, 116 protocols (76.8%) solicited broad consent compared to specific consent (32; 21.2%) [p < 0.0001]. In 105 cases a code was used to maintain confidentiality. HBMs were anonymised in 14 protocols [p < 0.0001]. More protocols informed the REC (90) than the research participants (67) that HBMs would be exported (p = 0.011). Export permits (EPs) and Material Transfer Agreements (MTAs) were not available in 109 and 143 protocols, respectively.ConclusionsResearchers and the REC did not adequately address the inter‐related ethical and regulatory issues pertaining to HBMs. There was a lack of congruence between the ethical guidelines of developed countries and their actions which are central to the access to HBMs in collaborative research. HBMs may be leaving South Africa without EPs and MTAs during the process of international collaborative research. (shrink)

Our claim in this paper is that not being identified as the data source might cause harm to a person or group. Therefore, in some cases the default of anonymisation should be replaced by a careful deliberation, together with research subjects, of how to handle the issues of identification and confidentiality. Our prime example in this article is community participatory research and similar endeavours on indigenous groups. The theme, content and aim of the research, and the question of how (...) to handle property rights and ownership of research results, as well as who should be in charge of the research process, including the process of creating anonymity, should all be answered, before anonymity is accepted. (shrink)

So-called ‘anonymous’ tissue samples are widely used in research. Because they lack externally identifying information, they are viewed as useful in reconciling conflicts between the control, privacy and confidentiality interests of those from whom the samples originated and the public (or commercial) interest in carrying out research, as reflected in ‘consent or anonymise’ policies. High level guidance documents suggest that withdrawal of consent and samples and the provision of feedback are impossible in the case of anonymous samples. In view of (...) recent developments in science and consumer-driven genomics the authors argue that such statements are misleading and only muddle complex ethical questions about possible entitlements to control over samples. The authors therefore propose that terms such as ‘anonymised’, ‘anonymous’ or ‘non-identifiable’ be removed entirely from documents describing research samples, especially from those aimed at the public. This is necessary as a matter of conceptual clarity and because failure to do so may jeopardise public trust in the governance of large scale databases. As there is wide variation in the taxonomy for tissue samples and no uniform national or international standards, the authors propose that a numeral-based universal coding system be implemented that focuses on specifying incremental levels of identifiability, rather than use terms that imply that the reidentification of research samples and associated actions are categorically impossible. (shrink)

Research into personal health data holds great potential not only for improved treatment but also for economic growth. In these years many countries are developing policies aimed at facilitating such research often under the banner of ‘big data’. A central point of debate is whether the secondary use of health data requires informed consent if the data is anonymised. In 2013 the Danish Minister of Health established a new register collecting data about all ritual male childhood circumcisions in Denmark. The (...) main purpose of the register was to enable future research into the consequences of ritual circumcision. This article is a study into the case of the Danish Circumcision Registry. We show that such a registry may lead to various forms of harm such as 1) overreaching social pressure, 2) stigmatization, 3) medicalization of a religious practice, 4) discrimination, and 5) polarised research, and that a person may therefore have a strong and legitimate interest in deciding whether or not such data should be collected and/or used in research. This casts doubt on the claim that the requirement of informed consent could and should be waived for all types of secondary research into registries. We finally sketch a new model of informed consent – Meta consent – aimed at striking a balance between the interests in promoting research and at the same time protecting the individual. Research participants may have a strong and legitimate interest in deciding whether or not their data should be collected and used for registry-based research whether or not their data is anonymised. (shrink)

On elective students may not always be clear about safeguarding themselves and others. It is important that placements are safe, and ethically grounded. A concern for medical schools is equipping their students for exposure to and response to uncomfortable and/or unfamiliar requests in locations away from home, where their comfort and safety, or that of the patient, may be compromised. This can require legal, ethical, and/or moral reasoning on the part of the student. The goal of this article is to (...) establish what students actually encounter on elective, to inform better preparing students for safe and ethical medical placements. We discuss the implications of our findings, which are arguably applicable to other areas of graduate training, e.g. first medical roles post-qualification. An anonymised survey exploring clinical and ethical dilemmas on elective was issued across 3 years of returning final year elective medical students. Questions included the prevalence and type of potentially unsafe scenarios encountered, barriers to saying ‘no’ in unsafe situations, perceived differences between resource poor and developed world settings and the degree to which students refused or consented to participation in events outside of the ‘norms’ of their own training experience. Three hundred seventy-nine students participated. 45% were asked to do something “not permissible” at home. 27% were asked to do something they felt “uncomfortable” with, often an invasive clinical task. Half asked to do something not usually permissible were “comfortable”. 48% felt it more acceptable to bypass guidelines in developing settings. 27% refused an offer outside their experience. Of interest are reasons for “going along with” uncomfortable invitations, e.g. “emergency”, self-belief in ‘capability’ and being ‘more qualified’ than host-personnel. This “best pair of hands available” merits scrutiny. Adverse scenarios were not exclusive to developing settings. We discuss preparing students for decision-making in new contexts, and address whether ‘home’ processes are too inflexible to prepare students for ‘real’ medical life? Ethical decision-making and communicating reluctance should be included in elective preparation. (shrink)

The Data Protection Act 1998 presents a number of significant challenges to data controllers in the health sector. To assist data controllers in understanding their obligations under the act, the Information Commissioner has published guidance, The Use and Disclosure of Health Data, which is reproduced here. The guidance deals, among other things, with the steps that must be taken to obtain patient data fairly, the implied requirements of the act to use anonymised or psuedonymised data where possible, an exemption applicable (...) principally to records based research, the right of patients to object to the processing of their data, and the interface of the act and the common law duty of confidence. (shrink)

The EU offers a suitable milieu for the comparison and harmonisation of healthcare across different languages, cultures, and jurisdictions, which could provide improvements in healthcare standards across the bloc. There are specific ethico-legal issues with the use of data in healthcare research that mandate a different approach from other forms of research. The use of healthcare data over a long period of time is similar to the use of tissue in biobanks. There is a low risk to subjects but it (...) is impossible to gain specific informed consent given the future possibilities for research. Large amounts of data on a subject present a finite risk of re-identification. Consequently, there is a balancing act between this risk and retaining sufficient utility of the data. Anonymising methods need to take into account the circumstances of data sharing to enable an appropriate balance in all cases. There are ethical and policy advantages to exceeding the legal requirements and thereby securing the social licence for research. This process would require the examination and comparison of data protection laws across the trading bloc to produce an ethico-legal framework compatible with the requirements of all member states. Seven EU jurisdictions are given consideration in this critique. (shrink)

This article engages feminist critiques of Christology with the views of Christian women living on council estates in the United Kingdom. It explores some of the ways in which the faith of such women connects with and/or contradicts feminist and womanist understandings of Christ. It is demonstrated that Jesus has been thought of in terms of ‘Nan-Nan’, or as a ‘Street Mother’, and that women living in areas of economic deprivation, and elsewhere, might lay claim to such terminology as a (...) way to further articulate identification with Christ, and in order to challenge traditionally androcentric Christology. A series of Christological questions are explored, for example, ‘Who is Jesus?’; ‘Do you think Jesus puts men in charge of women?’ and the anonymised answers are recorded at the beginning of each chapter. It is proposed that feminist Christology may enhance a sentiment already present among Christian women on estates, and, further to this, propel the pursuit of liberation from kyriarchal oppression. In this way, the Christian faith of women on estates is, and can become more and more so, an act of insubordination in the face of oppression of many kinds. Not least, it contributes a fresh and important Christological perspective. (shrink)

A study was undertaken of the views of users of two genitourinary medicine (GUM) clinics in England on unlinked anonymous testing (UAT) for HIV. The UAT programme measures the prevalence of HIV in the population, including undiagnosed prevalence, by testing residual blood (from samples taken for clinical purposes) which is anonymised and irreversibly unlinked from the source. 424 clinic users completed an anonymous questionnaire about their knowledge of, and attitudes towards, UAT. Only 1/7 (14%) were aware that blood left over (...) from clinical testing may be tested anonymously for HIV. A large majority (89%) said they would agree to their blood being tested, although 74% wanted the opportunity to consent. These findings indicate broad support for UAT of blood in a group of patients whose samples are included in the HIV surveillance programme. The findings suggest the need for greater attention to be given to the provision of information and, if replicated in a larger survey, may justify a reappraisal of UK policy on UAT. (shrink)

Background: Midwifery students are confronted with several ethical dilemmas and challenging situations during clinical midwifery care practice. Since ethical competence of midwifery students is under development, it is important to support the students’ learning progress of ethical issues from diverse viewpoints. Objective: From the perspective of didactics of caring science and the context of midwifery students, to explore how midwifery students’ experience supports for ethical competence in midwifery education and investigate how ethically challenging situations have been carried out during clinical (...) midwifery care practice. Design: Qualitative, explorative and descriptive design with inductive nature. Methods: Focus group interviews with nine Swedish midwifery students. Hans-Georg Gadamer’s philosophical hermeneutics was applied to guide the interpretation. Ethical considerations: Ethical principles and scientific guidelines were followed. Informed consent was obtained from the participants. Confidentiality was respected and quotations anonymised. Results: Receiving support when ethically challenging situations occur in clinical midwifery practice is important and necessary. One main theme, such as support is a human and caring factor in the midwifery students’ Bildung process on ethical competence, and four subthemes, such as supporting through trust and responsibility; supporting through dignity and respect; supporting through truthfulness and justice; and supporting through dialogue and reflection, were created from the hermeneutical interpretation. Discussion: Teaching ethics should be carefully planned, consistent and continue throughout the midwifery education. There is dispersion in the pedagogy of ethical situations, the methods and perceptions associated with it, and in obtaining possible support for students. Developing well-experienced methods could benefit the support of midwifery students’ ethical competence when they experience ethically challenging situations in midwifery care practice. (shrink)

Dans un contexte où les technologies numériques favorisent la traçabilité des échanges et tandis que se répand l'appréhension d'une surveillance globale, le citoyen pourrait craindre que ses télécommunications soient bien davantage écoutées ou écoutables par l'État Big Brother qu'à l'époque des « bretelles » sur téléphones filaires. Or, sans même parler des progrès des protections légales, ce scénario cauchemar « panacoustique » se heurte à la complexité des protocoles et vecteurs de communication, comme aux stratégies d'anonymisation ou de furtivité (...) contre les écoutes légales. En revanche, des acteurs privés, souvent criminels, exploitent les failles sécuritaires notamment des téléphones mobiles des nouvelles générations; truands ou officines peuvent souvent savoir ce que le juge d'instruction ne pourra découvrir, tandis que le matériel d'espionnage privé se banalise. Ce phénomène pose des questions politiques concernant la souveraineté et le contrôle des moyens de violer les secrets.In a context where digital technologies are making it easier to keep track of various types of communication, with attendant fears of globally expanding surveillance, citizens may well suspect that their telecommunications are, or are capable of, being monitored to a much greater extent by the Big Brother State than in the days when surveillance was limited to wiretaps on landlines. However, this nightmare "globalphone-tapping" scenario has to contend not only with advances in legal protection but also with the complexities of communication protocols and vectors and with the various counter-measures that have developed to secure anonymity against legal eavesdropping. However, private groups, often with criminal intent, are becoming adept at exploiting security loopholes, especially in late-generation mobile phone systems. Criminals and shady commercial establishments can often find information that no magistrate would have access to, while private surveillance equipment is becoming available practically over-the-counter. All these developments raise political issues of sovereignty and control over means of violating privacy. (shrink)

Our study considers the governance, ethics and operational challenges associated with the acquisition, manipulation and commodification of ‘big data’ in the financial services sector. To the best of our knowledge, there are no published studies describing empirical research undertaken within companies in this sector to understand how they are responding to such challenges: our field-based research is a significant initial contribution in this respect. We describe the results of a micro-ethnographic study undertaken in a small-to-medium-sized company developing disruptive, technology-related platforms (...) and services in the banking and retail sectors based on big data and associated analytics: these are used to derive commercially valuable insights from personal customer data in exchange for cash back and targeted rewards. The company was found to employ a multi-level innovation governance approach, underpinned by an ethical strategy based on a principle of mutual benefit. Opt-in and informed consent for using data for specific purposes was supported by principles of data minimisation and anonymisation, with unrestricted use of secondary, anonymised and aggregated data to develop insights. Governance, which included contextual data protection legislation, payment-card industry data usage standards and internal corporate controls, presented as bespoke organisational practices relating to data security and privacy. These in total set the governance and ethics frame for big data innovation at the company within which it has had to be both adaptive and responsive under conditions of normative and regulatory uncertainty. (shrink)

Peer review of manuscripts for biomedical journals has become a subject of intense ethical debate. One of the most contentious issues is whether or not peer review should be anonymous. This study aimed to generate a rich, empirically-grounded understanding of the values held by journal editors and peer reviewers with a view to informing journal policy. Qualitative methods were used to carry out an inductive analysis of biomedical reviewers’ and editors’ values. Data was derived from in-depth, open-ended interviews with journal (...) editors and peer reviewers. Data was “read for” themes relevant to reviewer anonymisation and interactions among editors, reviewers, and authors. Editors and peer reviewers provided three arguments that would support a more open and interactive peer-review process. First, a number of participants emphasised the importance of not only ensuring the scientific quality of published research but also nurturing their colleagues and supporting their communities. Second, many spoke about the ongoing moral responsibilities that reviewers and editors felt toward authors. Finally, participants spoke at length about their enjoyment of social interactions and of the value of collective, rather than isolated, reasoning processes. Whether or not journal editors decide to allow anonymous review , the values of editors and reviewers need to be seriously addressed in codes of publication ethics, in the management of biomedical journals, and in the establishment of journal policies. (shrink)

The increasing possibilities for using tissue for research and development in genetics and biotechnology have made stored human biological materials more important than ever. Using stored human biological materials raises many legal and ethical questions. On an international level however, the use of these materials has not been regulated in a detailed manner so far. The Council of Europe recently declassified the text of the proposal for an instrument on the use of archived human biological materials in biomedical research for (...) public consultation. The purpose of this paper is to comment on this document regarding its primary goal, which is to protect the rights and fundamental freedoms of the individual whose biological materials could be included in a research project. The guidelines offer good basic protection for sources of identifiable human biological materials but, surprisingly, offer no protection to sources of anonymous or anonymised materials. (shrink)

Introduction to, and overview of, the contents of the Symposium on consent and confidentialityThe papers in this symposium are based on a meeting held by the Academy of Medical Sciences in London on 12 February 2002. The decision to hold this meeting, and to explore in detail these important and contentious issues, arose from a number of concerns that the Academy felt about what may reasonably be called “impediments to medical research”.These include: The regulations arising from the implementation of the (...) European data protection directive and their effect on the gathering and holding of data needed for disease surveillance as well as for research. Phil Boyd, in his paper, presents the views and the work of the Information Commission, the responsible UK body in this area. The “Source Informatics” case where the Department of Health requested a judicial review on the use, by this company, of anonymised prescribing data from general practitioner records for informing the pharmaceutical industry about patterns of drug use. Mr Justice Latham ruled that the use of even this anonymised data for commercial purposes could be a breach of patients' rights to confidentiality. The Court of Appeal, however, emphatically reversed his decision and, no further appeal having been made to the House of Lords, the law of the land is now clear that there is no breach of confidentiality in the use of anonymised data. It did seem to us, …. (shrink)

The first ever interdisciplinary handbook in the field, this vital resource offers wide-ranging analysis of health research regulation. The chapters confront gaps between documented law and research in practice, and draw on legal, ethical and social theories about what counts as robust research regulation to make recommendations for future directions. The handbook provides an account and analysis of current regulatory tools - such as consent to participation in research and the anonymisation of data to protection participants' privacy - as (...) well as commentary on the roles of the actors and stakeholders who are involved in human health research and its regulation. Drawing on a range of international examples of research using patient data, tissue and other human materials, the collective contribution of the volume is to explore current challenges in delivering good medical research for the public good and to provide insights on how to design better regulatory approaches. This title is also available as Open Access on Cambridge Core. (shrink)

PurposeScarce evidence exists regarding end-of-life decision (EOLD) in neurocritically ill patients. We investigated the factors associated with EOLD making, including the group and individual characteristics of involved healthcare professionals, in a multiprofessional neurointensive care unit (NICU) setting.Materials and methodsA prospective, observational pilot study was conducted between 2013 and 2014 in a 10-bed NICU. Factors associated with EOLD in long-term neurocritically ill patients were evaluated using an anonymised survey based on a standardised questionnaire.Results8 (25%) physicians and 24 (75%) nurses participated in (...) the study by providing their ‘treatment decisions’ for 14 patients at several time points. EOLD was ‘made’ 44 (31%) times, while maintenance of life support 98 (69%) times. EOLD patterns were not significantly different between professional groups. The individual characteristics of the professionals (age, gender, religion, personal experience with death of family member and NICU experience) had no significant impact on decisions to forgo or maintain life-sustaining therapy. EOLD was patient-specific (intraclass correlation coefficient: 0.861), with the presence of acute life-threatening disease (OR (95% CI): 18.199 (1.721 to 192.405), p=0.038) and low expected patient quality of life (OR (95% CI): 9.276 (1.131 to 76.099), p=0.016) being significant and independent determinants for withholding or withdrawing life-sustaining treatment.ConclusionsOur findings suggest that EOLD in NICU relies mainly on patient prognosis and not on the characteristics of the healthcare professionals. (shrink)

Aims: The aims of the study were to explore expert opinion on the distinction between “research” and “audit”, and to determine the need for review by a National Health Service (NHS) Research Ethics Committee (REC). Background: Under current guidelines only “research” projects within the NHS require REC approval. Concerns have been expressed over difficulties in distinguishing between research and other types of project, and no existing guidelines appear to have been validated. The implications of this confusion include unnecessary REC applications, (...) and crucially, the potential for ethically unsound projects to escape review. Methods: A three-stage Delphi method was chosen to explore expert opinion and develop consensus. Stage 1 comprised ten semi-structured interviews gathering opinion on distinguishing between types of project and how to determine need for ethical review. Stages 2 and 3 were questionnaires, asking 24 “experts” to rate levels of ethical concern and types of project for a series of questions. Anonymised responses from stage 2 were fed back in stage 3. The final responses were analysed for consensus. Results: Of 46 questions, consensus was achieved for 14 (30.4%) for level of ethical concern and for 15 (32.6%) for type of project. Conclusions: Several ideas proved discriminatory for classifying the type of project and assessing level of ethical concern, and they can be used to develop an algorithm to determine need for ethical review. There was little relationship between assessment of the level of ethical concern and classification of the project. There was inconsistency in defining and classifying studies as something other than “research” or “audit”. (shrink)

The effectiveness of vaccination programmes depends on high levels of public trust in political, scientific and health-related institutions, but public trust in vaccines can waver. This article explores aspects of public trust and mistrust on a web media platform about the MMR (measles-mumps-rubella) vaccine through the statements of a doctor and an anonymised ‘anti-vaxxer’. Thematic analysis identifies commonalities and divergences in both perspectives. Both trust and mistrust of MMR vaccination are presented as moral, reasoned stances by their proponents; they are (...) connected to the individual’s experiences and situations, but are associated with very different trust attitudes to scientific and political institutions. Moreover, both the trustworthiness of the speakers themselves and the (un)trustworthiness of authorities are emphasised. Trust and mistrust are also thematised in relation to contextual matters such as the role of social media and the historical MMR controversy. Further research towards identifying common ground between trust positions is recommended. (shrink)

Background In nursing homes, residents’ relatives represent important sources of support for nurses. However, in the heightened stress of emergency situations, interaction between nurses and relatives can raise ethical challenges. Research objectives The present analysis aimed at elaborating a typology of nurses’ experience of ethical support and challenges in their interaction with relatives in emergency situations. Research design Thirty-three semi-structured interviews and six focus groups were conducted with nurses from different nursing homes in Germany. Data were analysed according to Mayring’s (...) method of qualitative content analysis. Participants and research context Participants were licensed nurses working in nursing homes. Ethical considerations Ethical approval was granted by Ostfalia University of Applied Sciences (02.07.2020) and the Ethics Committee of Hannover Medical School (Nr. 8866_BO_K_2020; 27.01.2020). Interviewees were anonymised and focus group were pseudonymised during transcription. All participants provided written consent. Findings/results In emergency situations, relatives can represent important sources of support for nurses. However, they may also give rise to different challenges, relating to four ethical conflicts: (1) the challenge of meeting the information needs of relatives while providing appropriate care to all residents; (2) the challenge of managing relatives’ demands for hospitalisation when hospitalisation is not deemed necessary by nurses; (3) the challenge of managing relatives’ demands for lifesaving treatment when such treatment contradicts the will of the resident; and (4) the challenge of attempting to initiate hospitalisation when relatives oppose this course of action. Several external factors make these conflicts especially challenging for nurses: fear of legal consequences, a low staffing ratio, and a lack of qualified nursing staff. Conclusions Conflict between nurses and relatives typically revolves around hospitalisation and the initiation of lifesaving treatment. Whether nurses perceive interaction with relatives as supportive or conflictual essentially depends on the quality of the relationship, which may be negatively influenced by a number of external factors. (shrink)

BackgroundThe current paper follows up on the results of an exploratory quantitative analysis that compared the publication and citation records of men and women researchers affiliated with the Faculty of Computing and Engineering at Dublin City University in Ireland. Quantitative analysis of publications between 2013 and 2018 showed that women researchers had fewer publications, received fewer citations per person, and participated less often in international collaborations. Given the significance of publications for pursuing an academic career, we used qualitative methods to (...) understand these differences and explore factors that, according to women researchers, have contributed to this disparity.MethodsSixteen women researchers from DCU’s Faculty of Computing and Engineering were interviewed using a semi-structured questionnaire. Once interviews were transcribed and anonymised, they were coded by both authors in two rounds using an inductive approach.ResultsInterviewed women believed that their opportunities for research engagement and research funding, collaborations, publications and promotions are negatively impacted by gender roles, implicit gender biases, their own high professional standards, family responsibilities, nationality and negative perceptions of their expertise and accomplishments.ConclusionsOur study has found that women in DCU’s Faculty of Computing and Engineering face challenges that, according to those interviewed, negatively affect their engagement in various research activities, and, therefore, have contributed to their lower publication record. We suggest that while affirmative programmes aiming to correct disparities are necessary, they are more likely to improve organisational culture if they are implemented in parallel with bottom-up initiatives that engage all parties, including men researchers and non-academic partners, to inform and sensitise them about the significance of gender equity. (shrink)

Two general ethical problems in psychiatry are thrown into sharp relief by long term care. This article discusses each in turn, in the context of two anonymised case studies from actual clinical practice. First, previous mental health legislation soothed doubts about patients' refusal of consent by incorporating time limits on involuntary treatment. When these are absent, as in the provisions for long term care which have recently come into force, the justification for compulsory treatment and supervision becomes more obviously problematic. (...) Second, Anglo-American law does not normally allow the preventive detention of someone who may be dangerous but has not actually committed any crime. The justification for detaining a possibly dangerous user of mental health services without his or her consent can only be based on risk assessment, but this raises issues of moral luck. Is the psychiatrist who decides not to take out a supervision order for a possibly dangerous patient with an initial psychotic diagnosis morally at fault if that person harms someone in the community, or himself? Or is the psychiatrist merely unlucky? (shrink)

Introduction Stored human samples and the establishment of biobanks are increasing in the world. Along with this there are the questions of ethics that arise such as the correct method of obtaining informed consent for research on stored samples and the policies involved in collaborative research using collected samples. This study is an attempt to evaluate the researchers, academics and policy makers' views on these ethical aspects. Methods This was an anonymised study involving a Sri Lankan population of researchers, ethics (...) committee members, and policy makers. A self administered questionnaire was utilised as the study instrument. The questionnaire captured four major areas of interest: demographic characteristics of respondents, their attitudes on informed consent policy, their opinion on rights of collaborating researchers, their attitudes on dealing with international differences in regulatory frameworks. Results The study included 55 responders with 40/55 agreeing that donors should receive the option of giving informed consent for future research, with 31/55 considering multiple- type consent options most appropriate. Regarding the issue of shared samples in collaborative research majority agreed that source country ethics review committee approval was necessary 53/55. Conclusion The study concludes that sample donors should be given the option of giving advance consent to unspecified future research provided that future research is approved by an ethics committee. In collaborative research, it is necessary to involve ethics committees from donor countries in the research approval process. (shrink)

Avon Longitudinal Study of Parents and Children is a birth cohort study within which the Project to Enhance ALSPAC through Record Linkage was established to enrich the ALSPAC resource through linkage between ALSPAC participants and routine sources of health and social data. PEARL incorporated qualitative research to seek the views of young people about data linkage, including their opinions about appropriate safeguards and research governance. In this paper we focus on views expressed about the purpose and composition of research ethics (...) committees. Digitally recorded interviews were conducted with 48 participants aged 17–19 years. Participants were asked about whether medical research should be monitored and controlled, their knowledge of research ethics committees, who should sit on these committees and what their role should be. Interview recordings were fully transcribed and anonymised. Thematic analysis was undertaken, assisted by the Framework approach to data management. The majority of interviewees had little or no specific knowledge of ethics committees. Once given basic information about research ethics committees, only three respondents suggested there was no need for such bodies to scrutinise research. The key tasks of ethics committees were identified as monitoring the research process and protecting research participants. The difficulty of balancing the potential to inhibit research against the need to protect research participants was acknowledged. The importance of relevant research and professional expertise was identified but it was also considered important to represent wider public opinion, and to counter the bias potentially associated with self-selection possibly through a selection process similar to ‘jury duty’. There is a need for more education and public awareness about the role and composition of research ethics committees. Despite an initial lack of knowledge, interviewees were able to contribute their ideas and balance the rights of individuals with the wider benefits from research. The suggestion that public opinion should be represented through random selection similar to jury duty may be worth pursuing in the light of the need to ensure diversity of opinion and establish trust amongst the general public about the use of ‘big data’ for the wider public good. (shrink)

BackgroundData processing of health research databases often requires a Data Protection Impact Assessment to evaluate the severity of the risk and the appropriateness of measures taken to comply with the European Union General Data Protection Regulation. We aimed to define and apply a comprehensive method for the evaluation of privacy, data governance and ethics among research networks involved in the EU Project Bridge Health.MethodsComputerised survey among associated partners of main EU Consortia, using a targeted instrument designed by the principal investigator (...) and progressively refined in collaboration with an international advisory panel. Descriptive measures using the percentage of adoption of privacy, data governance and ethical principles as main endpoints were used for the analysis and interpretation of the results.ResultsA total of 15 centres provided relevant information on the processing of sensitive data from 10 European countries. Major areas of concern were noted for: data linkage, access and accuracy of personal data and anonymisation procedures. A high variability was noted in the application of privacy principles.ConclusionsA comprehensive methodology of Privacy and Ethics Impact and Performance Assessment was successfully applied at international level. The method can help implementing the GDPR and expanding the scope of Data Protection Impact Assessment, so that the public benefit of the secondary use of health data could be well balanced with the respect of personal privacy. (shrink)

This article is a first person account of a first time Socratic Dialogue experience from a Sociospacial Reciprocity perspective. During the process, the writer was nominated as The Example for the Socratic Dialogue Question, ‘What is Wellbeing?’. The account is based both on the writer’s first-hand experience of the process, and the theoretical Socratic Dialogue process as discussed previously in this publication under the title, ‘Reflections on Socratic Dialogue I: the theoretical background in a modern context’ (to which the writer (...) also contributes). All identities have been anonymised for ethical reasons. (shrink)