Browsing by Subject "Ethics"
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- ItemOpen AccessBedside rationing and moral distress in nephrologists in sub- Saharan Africa(BioMed Central, 2022-05-25) Ashuntantang, Gloria; Miljeteig, Ingrid; Luyckx, Valerie ABackground Kidney diseases constitute an important proportion of the non-communicable disease (NCD) burden in Sub-Saharan Africa (SSA), though prevention, diagnosis and treatment of kidney diseases are less prioritized in public health budgets than other high-burden NCDs. Dialysis is not considered cost-effective, and for those patients accessing the limited service available, high out-of-pocket expenses are common and few continue care over time. This study assessed challenges faced by nephrologists in SSA who manage patients needing dialysis. The specific focus was to investigate if and how physicians respond to bedside rationing situations. Methods A survey was conducted among a randomly selected group of nephrologists from SSA. The questionnaire was based on a previously validated survey instrument. A descriptive and narrative approach was used for analysis. Results Among 40 respondents, the majority saw patients weekly with acute kidney injury (AKI) or end-stage kidney failure (ESKF) in need of dialysis whom they could not dialyze. When dialysis was provided, clinical compromises were common, and 66% of nephrologists reported lack of basic diagnostics and medication and > 80% reported high out-of-pocket expenses for patients. Several patient-, disease- and institutional factors influenced who got access to dialysis. Patients’ financial constraints and poor chances of survival limited the likelihood of receiving dialysis (reported by 79 and 78% of nephrologists respectively), while a patient’s being the family bread-winner increased the likelihood (reported by 56%). Patient and institutional constraints resulted in most nephrologists (88%) frequently having to make difficult choices, sometimes having to choose between patients. Few reported existence of priority setting guidelines. Most nephrologists (74%) always, often or sometimes felt burdened by ethical dilemmas and worried about patients out of hospital hours. As a consequence, almost 46% of nephrologists reported frequently regretting their choice of profession and 26% had considered leaving the country. Conclusion Nephrologists in SSA face harsh priority setting at the bedside without available guidance. The moral distress is high. While publicly funded dialysis treatment might not be prioritized in essential health care packages on the path to universal health coverage, the suffering of the patients, families and the providers must be acknowledged and addressed to increase fairness in these decisions.
- ItemOpen AccessA call to advance and translate research into policy on governance, ethics, and conflicts of interest in public health: the GECI-PH network(2021-01-25) Nakkash, Rima; Mialon, Melissa; Makhoul, Jihad; Arora, Monika; Afifi, Rima; Al Halabi, Abeer; London, LeslieEfforts to adopt public health policies that would limit the consumption of unhealthy commodities, such as tobacco, alcohol and ultra-processed food products, are often undermined by private sector actors whose profits depend on the sales of such products. There is ample evidence showing that these corporations not only try to influence public health policy; they also shape research, practice and public opinion. Globalization, trade and investment agreements, and privatization, amongst other factors, have facilitated the growing influence of private sector actors on public health at both national and global levels. Protecting and promoting public health from the undue influence of private sector actors is thus an urgent task. With this backdrop in mind, we launched the “Governance, Ethics, and Conflicts of Interest in Public Health” Network (GECI-PH Network) in 2018. Our network seeks to share, collate, promote and foster knowledge on governance, ethical, and conflicts of interest that arise in the interactions between private sectors actors and those in public health, and within multi-stakeholder mechanisms where dividing lines between different actors are often blurred. We call for strong guidance to address and manage the influence of private sector actors on public health policy, research and practice, and for dialogue on this important topic. Our network recently reached 119 members. Membership is diverse in composition and expertise, location, and institutions. We invite colleagues with a common interest to join our network.
- ItemOpen AccessThe dissonance of guilt : an examination of the human condition's fundamental dynamic of guilt feelings, referring to psychological and religious discourse and how they could be combined to facilitate mental health(1986) Boothroyd, David Gordon; Chidester, David; Cumpsty, John SFeeling guilty is an experience we all know. It is a condition that ensures we remain cognisant of our obligations to our- selves and to others so that we live within the bounds of appropriate behaviour. When obligations are violated and deviance is evident, the resultant dissonance between expected and contrary behaviour generates feelings of inner environment discomfort and self-criticism recognised as guilt feelings. Whether such states of internal dissonance are psychodynamically induced, as Freud maintained, or are the result of not meeting ethical obligations, as decreed by particular religious systems, or are due to an inevitable faculty of being human, they have to be controlled if the mental health of the individual experiencing them is not to be detrimentally affected. What psychology and religion have to say about ensuring that this control is effective has unfortunately become dichotomous and disparate realms of discourse. A common discourse is necessary if the insights of each are to most effectively deal with mental health care. To this end, this thesis is presented as a means for assisting psychotherapists in a re-assessment of the interface between psychology and religion.
- ItemOpen AccessEnrolling adolescents in HIV vaccine trials: reflections on legal complexities from South Africa(BioMed Central Ltd, 2007) Slack, Catherine; Strode, Ann; Fleischer, Theodore; Gray, Glenda; Ranchod, ChitraBACKGROUND:South Africa is likely to be the first country in the world to host an adolescent HIV vaccine trial. Adolescents may be enrolled in late 2007. In the development and review of adolescent HIV vaccine trial protocols there are many complexities to consider, and much work to be done if these important trials are to become a reality.DISCUSSION:This article sets out essential requirements for the lawful conduct of adolescent research in South Africa including compliance with consent requirements, child protection laws, and processes for the ethical and regulatory approval of research.SUMMARY:This article outlines likely complexities for researchers and research ethics committees, including determining that trial interventions meet current risk standards for child research. Explicit recommendations are made for role-players in other jurisdictions who may also be planning such trials. This article concludes with concrete steps for implementing these important trials in South Africa and other jurisdictions, including planning for consent processes; delineating privacy rights; compiling information necessary for ethics committees to assess risks to child participants; training trial site staff to recognize when disclosures trig mandatory reporting response; networking among relevant ethics commitees; and lobbying the National Regulatory Authority for guidance.
- ItemOpen AccessEthical challenges in global health-related stigma research(2019-04-29) Millum, Joseph; Campbell, Megan; Luna, Florencia; Malekzadeh, Arianne; Karim, Quarraisha ABackground It is critically important to conduct research on stigmatized conditions, to include marginalized groups that experience stigma, and to develop interventions to reduce stigma. However, such research is ethically challenging. Though superficial reference is frequently made to these widely acknowledged challenges, few publications have focused on ethical issues in research on stigmatized groups or conditions. In fact, a brief literature review found only two such publications. Main text At a recent Science of Stigma Reduction workshop comprising 60 stigma researchers from the USA and low and middle-income countries, the need for more robust and critical discussion of the ethics of the research was highlighted. In this paper we describe, illustrate through cases, and critically examine key ethical challenges that are more likely to arise because a research study focuses on health-related stigma or involves stigmatized groups or conditions. We examine the ethics of this research from two perspectives. First, through the lens of overprotection, where we discuss how the perception of stigma can impede ethical research, disrespect research participants, and narrow the research questions. Second, through the lens of research risks, where we consider how research with stigmatized populations can unintentionally result in harms. Research-related harms to participants include potential breaches of confidentiality and the exacerbation of stigma. Potential harms also extend to third parties, including families and populations who may be affected by the dissemination of research results. Conclusions Research with stigmatized populations and on stigmatized conditions should not be impeded by unnecessary or inappropriate protective measures. Nevertheless, it may entail different and greater risks than other health research. Investigators and research ethics committees must be particularly attentive to these risks and how to manage them.
- ItemOpen AccessEthical issues in genomic research on the African continent: experiences and challenges to ethics review committees(2014-08-21) Ramsay, Michèle; de Vries, Jantina; Soodyall, Himla; Norris, Shane A; Sankoh, OsmanAbstract This is a report on a workshop titled ‘Ethics for genomic research across five African countries: Guidelines, experiences and challenges’, University of the Witwatersrand, Johannesburg, South Africa, 10 and 11 December 2012. The workshop was hosted by the Wits-INDEPTH partnership, AWI-Gen, as part of the H3Africa Consortium.
- ItemOpen AccessThe ethics of humanitarian aid in conflict situations(2013) Allen, Timothy; Benatar, DavidThe plight of people suffering from the violence and deprivation of conflict attracts a great deal of aid. Such aid is often inspired by the thought that we have some responsibility to protect or assist innocent victims of war. However, this humanitarian response is vulnerable to abuse. Combatants can manipulate the supply of aid to achieve their ends, or channel aid to provide their forces with additional food or arms, and so extend the conflict. This poses a challenge to our obligation to assist victims of conflict: if the aid hurts more than it helps, a reasonable response is to refrain from giving aid. This may not help people in need, but it avoids hurting them further. A better response would be to find another means of helping people trapped by conflict which does not risk making their positions worse. This dissertation explores a variety of means that might enable us to help victims of conflict, such as redirecting aid, intervening militarily, or enacting sanctions. One promising strategy involves removing or altering certain international rules which have a role in encouraging conflict. Altering these rules requires concerted advocacy and political will, but given sufficient attention, such an approach could shorten or reduce the severity of some conflicts, or curtail their ill effects on civilians.
- ItemOpen AccessExplaining and responding to the Ebola epidemic(2015-03-04) Benatar, SolomonAbstract The Ebola epidemic in West Africa is not merely a biomedical problem that can be seen in isolation and dealt with only through emergency medical rescue processes. The ethical dilemmas surfaced by this epidemic are also not confined to the usual micro-ethical problems associated with medical care and medical research. The pandemic, as one of many manifestations of failed human and social development that has brought the world to dangerous ‘tipping points’, requires deep introspection and action to address upstream causal processes.
- ItemOpen AccessGlobal health ethics: critical reflections on the contours of an emerging field, 1977–2015(2019-07-25) Robson, Gail; Gibson, Nathan; Thompson, Alison; Benatar, Solomon; Denburg, AvramAbstract Background The field of bioethics has evolved over the past half-century, incorporating new domains of inquiry that signal developments in health research, clinical practice, public health in its broadest sense and more recently sensitivity to the interdependence of global health and the environment. These extensions of the reach of bioethics are a welcome response to the growth of global health as a field of vital interest and activity. Methods This paper provides a critical interpretive review of how the term “global health ethics” has been used and defined in the literature to date to identify ethical issues that arise and need to be addressed when deliberating on and working to improve the discourse on ethical issues in health globally. Results Selected publications were analyzed by year of publication and geographical distribution, journal and field, level of engagement, and ethical framework. Of the literature selected, 151 articles (88%) were written by authors in high-income countries (HIC), as defined by the World Bank country classifications, 8 articles (5%) were written by authors in low- or middle-income countries (LMIC), and 13 articles (7%) were collaborations between authors in HIC and LMIC. All of the articles selected except one from 1977 were published after 1998. Literature on global health ethics spiked considerably from the early 2000s, with the highest number in 2011. One hundred twenty-seven articles identified were published in academic journals, 1 document was an official training document, and 44 were chapters in published books. The dominant journals were the American Journal of Bioethics (n = 10), Developing World Bioethics (n = 9), and Bioethics (n = 7). We coded the articles by level of engagement within the ethical domain at different levels: (1) interpersonal, (2) institutional, (3) international, and (4) structural. The ethical frameworks at use corresponded to four functional categories: those examining practical or narrowly applied ethical questions; those concerned with normative ethics; those examining an issue through a single philosophical tradition; and those comparing and contrasting insights from multiple ethical frameworks. Conclusions This critical interpretive review is intended to delineate the current contours and revitalize the conversation around the future charge of global health ethics scholarship.
- ItemOpen AccessLiberal ethics in South Africa since 1948 : power, principle and responsible action(1985) Godsell, R MThis dissertation examines a four part hypothesis: (a) that liberal ethics in South Africa, particularly since the victory of the (Afrikaner) National Party in 1948, have been characterised by a sense of political powerlessness; (b) that as a consequence of this powerlessness, these ethics have been more concerned with principle, motives, conscience and internal consistency than with the consequences of liberal action; (c) that this sense of powerlessness is not justified in the social and political environment of the 1980's; and therefore, (d) that liberals should review their ethical approach with a view to developing an ethic of responsible liberal action.
- ItemOpen AccessA pandemic recap: lessons we have learned(2021-09-10) Coccolini, Federico; Cicuttin, Enrico; Cremonini, Camilla; Tartaglia, Dario; Viaggi, Bruno; Kuriyama, Akira; Picetti, Edoardo; Ball, Chad; Abu-Zidan, Fikri; Ceresoli, Marco; Turri, Bruno; Jain, Sumita; Palombo, Carlo; Guirao, Xavier; Rodrigues, Gabriel; Gachabayov, Mahir; Machado, Fernando; Eftychios, Lostoridis; Kanj, Souha S; Di Carlo, Isidoro; Di Saverio, Salomone; Khokha, Vladimir; Kirkpatrick, Andrew; Massalou, Damien; Forfori, Francesco; Corradi, Francesco; Delibegovic, Samir; Machain Vega, Gustavo M.; Fantoni, Massimo; Demetriades, Demetrios; Kapoor, Garima; Kluger, Yoram; Ansari, Shamshul; Maier, Ron; Leppaniemi, Ari; Hardcastle, Timothy; Vereczkei, Andras; Karamagioli, Evika; Pikoulis, Emmanouil; Pistello, Mauro; Sakakushev, Boris E.; Navsaria, Pradeep H.; Galeiras, Rita; Yahya, Ali I; Osipov, Aleksei V; Dimitrov, Evgeni; Doklestić, Krstina; Pisano, Michele; Malacarne, Paolo; Carcoforo, Paolo; Sibilla, Maria G.; Kryvoruchko, Igor A; Bonavina, Luigi; Kim, Jae I; Shelat, Vishal G; Czepiel, Jacek; Maseda, Emilio; Marwah, Sanjay; Chirica, Mircea; Biancofiore, Giandomenico; Podda, Mauro; Cobianchi, Lorenzo; Ansaloni, Luca; Fugazzola, Paola; Seretis, Charalampos; Gomez, Carlos A.; Tumietto, Fabio; Malbrain, Manu; Reichert, Martin; Augustin, Goran; Amato, Bruno; Puzziello, Alessandro; Hecker, Andreas; Gemignani, Angelo; Isik, Arda; Cucchetti, Alessandro; Nacoti, Mirco; Kopelman, Doron; Mesina, Cristian; Ghannam, Wagih; Ben-Ishay, Offir; Dhingra, Sameer; Coimbra, Raul; Moore, Ernest E; Cui, Yunfeng; Quiodettis, Martha A.; Bala, Miklosh; Testini, Mario; Diaz, Jose; Girardis, Massimo; Biffl, Walter L; Hecker, Matthias; Sall, Ibrahima; Boggi, Ugo; Materazzi, Gabriele; Ghiadoni, Lorenzo; Matsumoto, Junichi; Zuidema, Wietse P; Ivatury, Rao; Enani, Mushira A; Litvin, Andrey; Al-Hasan, Majdi N.; Demetrashvili, Zaza; Baraket, Oussama; Ordoñez, Carlos A; Negoi, Ionut; Kiguba, Ronald; Memish, Ziad A; Elmangory, Mutasim M; Tolonen, Matti; Das, Korey; Ribeiro, Julival; O’Connor, Donal B; Tan, Boun K; Van Goor, Harry; Baral, Suman; De Simone, Belinda; Corbella, Davide; Brambillasca, Pietro; Scaglione, Michelangelo; Basolo, Fulvio; De’Angelis, Nicola; Bendinelli, Cino; Weber, Dieter; Pagani, Leonardo; Monti, Cinzia; Baiocchi, Gianluca; Chiarugi, Massimo; Catena, Fausto; Sartelli, MassimoOn January 2020, the WHO Director General declared that the outbreak constitutes a Public Health Emergency of International Concern. The world has faced a worldwide spread crisis and is still dealing with it. The present paper represents a white paper concerning the tough lessons we have learned from the COVID-19 pandemic. Thus, an international and heterogenous multidisciplinary panel of very differentiated people would like to share global experiences and lessons with all interested and especially those responsible for future healthcare decision making. With the present paper, international and heterogenous multidisciplinary panel of very differentiated people would like to share global experiences and lessons with all interested and especially those responsible for future healthcare decision making.
- ItemOpen AccessPotential use of clinical polygenic risk scores in psychiatry – ethical implications and communicating high polygenic risk(BioMed Central, 2019-02-27) Palk, A C; Dalvie, S; de Vries, J; Martin, A R; Stein, D JAbstract Psychiatric disorders present distinct clinical challenges which are partly attributable to their multifactorial aetiology and the absence of laboratory tests that can be used to confirm diagnosis or predict risk. Psychiatric disorders are highly heritable, but also polygenic, with genetic risk conferred by interactions between thousands of variants of small effect that can be summarized in a polygenic risk score. We discuss four areas in which the use of polygenic risk scores in psychiatric research and clinical contexts could have ethical implications. First, there is concern that clinical use of polygenic risk scores may exacerbate existing health inequities. Second, research findings regarding polygenic risk could be misinterpreted in stigmatising or discriminatory ways. Third, there are concerns associated with testing minors as well as eugenics concerns elicited by prenatal polygenic risk testing. Fourth, potential challenges that could arise with the feedback and interpretation of high polygenic risk for a psychiatric disorder would require consideration. While there would be extensive overlap with the challenges of feeding back genetic findings in general, the potential clinical use of polygenic risk scoring warrants discussion in its own right, given the recency of this possibility. To this end, we discuss how lay interpretations of risk and genetic information could intersect. Consideration of these factors would be necessary for ensuring effective and constructive communication and interpretation of polygenic risk information which, in turn, could have implications for the uptake of any therapeutic recommendations. Recent advances in polygenic risk scoring have major implications for its clinical potential, however, care should be taken to ensure that communication of polygenic risk does not feed into problematic assumptions regarding mental disorders or support reductive interpretations.
- ItemOpen AccessPublic/community engagement in health research with men who have sex with men in sub-Saharan Africa: challenges and opportunities(2016) Molyneux, Sassy; Sariola, Salla; Allman, Dan; Dijkstra, Maartje; Gichuru, Evans; Graham, Susan; Kamuya, Dorcas; Gakii, Gloria; Kayemba, Brian; Kombo, Bernadette; Maleche, Allan; Mbwambo, Jessie; Marsh, Vicki; Micheni, Murugi; Mumba, Noni; Parker, Michael; Shio, Jasmine; Yah, Clarence; van der Elst, Elise; Sanders, EduardAbstract Background Community engagement, incorporating elements of the broader concepts of public and stakeholder engagement, is increasingly promoted globally, including for health research conducted in developing countries. In sub-Saharan Africa, community engagement needs and challenges are arguably intensified for studies involving gay, bisexual and other men who have sex with men, where male same-sex sexual interactions are often highly stigmatised and even illegal. This paper contextualises, describes and interprets the discussions and outcomes of an international meeting held at the Kenya Medical Research Institute-Wellcome Trust in Kilifi, Kenya, in November 2013, to critically examine the experiences with community engagement for studies involving men who have sex with men. Discussion We discuss the ethically charged nature of the language used for men who have sex with men, and of working with ‘representatives’ of these communities, as well as the complementarity and tensions between a broadly public health approach to community engagement, and a more rights based approach. We highlight the importance of researchers carefully considering which communities to engage with, and the goals, activities, and indicators of success and potential challenges for each. We suggest that, given the unintended harms that can emerge from community engagement (including through labelling, breaches in confidentiality, increased visibility and stigma, and threats to safety), representatives of same-sex populations should be consulted from the earliest possible stage, and that engagement activities should be continuously revised in response to unfolding realities. Engagement should also include less vocal and visible men who have sex with men, and members of other communities with influence on the research, and on research participants and their families and friends. Broader ethics support, advice and research into studies involving men who have sex with men is needed to ensure that ethical challenges – including but not limited to those related to community engagement – are identified and addressed. Summary Underlying challenges and dilemmas linked to stigma and discrimination of men who have sex with men in Africa raise special responsibilities for researchers. Community engagement is an important way of identifying responses to these challenges and responsibilities but itself presents important ethical challenges.
- ItemOpen AccessA scoping review of considerations and practices for benefit sharing in biobanking(2021-07-27) Sudoi, Allan; De Vries, Jantina; Kamuya, DorcasBackground Despite the rapid global growth of biobanking over the last few decades, and their potential for the advancement of health research, considerations specific to the sharing of benefits that accrue from biobanks have received little attention. Questions such as the types and range of benefits that can arise in biobanking, who should be entitled to those benefits, when they should be provided, by whom and in what form remain mostly unanswered. We conducted a scoping review to describe benefit sharing considerations and practices in biobanking in order to inform current and future policy and practice. Methods Drawing on the Arksey and O’Malley framework, we conducted a scoping review of the literature in three online databases (PubMed, Cochrane library, and Google Scholar). We extracted and charted data to capture general characteristics, definitions and examples of benefits and benefit sharing, justification for benefit sharing, challenges in benefit sharing, governance mechanisms as well as proposed benefit sharing mechanisms. Results 29 articles published between 1999 and 2020 met the inclusion criteria for the study. The articles included 5 empirical and 24 non-empirical studies. Only 12 articles discussed benefit sharing as a stand-alone subject, while the remaining 17 integrated a discussion of benefits as one issue amongst others. Major benefit sharing challenges in biobanking were found to be those associated with uncertainties around the future use of samples and in resultant benefits. Conclusion Most of the benefit sharing definitions and approaches currently in use for biobanking are similar to those used in health research. These approaches may not recognise the distinct features of biobanking, specifically relating to uncertainties associated with the sharing and re-use of samples. We therefore support approaches that allow decisions about benefit sharing to be made progressively once it is apparent who samples are to be shared with, the intended purpose and expected benefits. We also highlight gaps in key areas informing benefit sharing in biobanking and draw attention to the need for further empirical research.
- ItemOpen AccessSome thoughts on practising physiotherapy in a multi-cultural country(2004) Jelsma, JenniferPhysiotherapists in South Africa are often confronted with ethical issues, which arise from the multi-cultural nature of the society. This paper discusses the ethical theory of cultural relativism in an attempt to highlight the complexities of making moral judgements across cultural, ethnic and religious boundaries.
- ItemOpen AccessWhen HIV clinicians prevent social scientists from accessing 'their' patients : some ethical concerns(Health and Medical Publishing Group, 2006) Nattrass, NicoliThere is an understandable tension between medical researchers and social scientists when it comes to AIDS-related research at clinic level. Clinics offering antiretroviral treatment exist primarily to assist patients - but many of them also provide 'data' for medical researchers. This may involve a randomised controlled trial, or simply the collection of data on adherence. A social scientist wishing to access patients to conduct interviews or focus groups thus (inevitably) appears to the HIV clinician as at best a disruption to an already over-stretched operation, and at worst a potentially confounding factor in his or her own research. Given that the medical practitioner/researchers effectively control the clinics, the temptation to deny social scientists access to patients must be strong. As discussed below, this was the case with regard to two Cape Town clinics that prevented a clinical psychologist (working in my research unit) from conducting social science research. Although understandable, such unaccountable exercise of power denies patients the opportunity to participate in other research projects that may be of benefit to them (or society) in ways that HIV clinicians do not necessarily appreciate. As such, it violates the principle of informed consent. It is also problematic in that it restricts the AIDS research agenda to biomedical concerns. This is particularly worrying with regard to AIDS, where it is widely accepted (by social scientists and HIV clinicians alike) that social and psychological factors matter a great deal for HIV prevention and treatment interventions.