260 research outputs found
Review of Anton A. Niekerk and Loretta M. Kopelman (eds.) Ethics and AIDS in Africa: The Challenge to our Thinking
Ethics, AIDS, and Africa – three concepts that conjure up
a host of powerful associations. Ethics: our fragile human
attempts to negotiate acceptable paths through conflicts
of value. AIDS: the world's deadliest epidemic since the
Black Plague of the 14th century. And Africa: cradle of
humankind, burdened by colonization, famine, poverty
and civil war. In what ways do ethics, AIDS and Africa go
together, and how is our thinking challenged by their relationship?
Editors Van Niekerk and Kopelman have assembled an
impressive list of well-respected authors to deal with this
question. Their contributions focus on the impact of AIDS
in sub-Saharan Africa and take on some of the key ethical
issues raised by HIV/AIDS research, policy and clinical
practice in the region. Although rich in details, it is fair to
say that four general themes dominate this book: the ethical
role of national governments in tackling the AIDS epidemic,
with special focus on the South African case; the
epidemic and responses to it as reflections of global inequity;
the ethical responsibilities of pharmaceutical companies
in the struggle against HIV/AIDS, and the dilemmas
involved in HIV prevention research, particularly in vaccine
studies
Penile transplantation as an appropriate response to botched traditional circumcisions in South Africa: an argument against
Traditional male circumcision is a deeply entrenched cultural practice in South Africa. In recent times, there have been increasing numbers of botched circumcisions by untrained and unscrupulous practitioners, leading to genital mutilation and often, the need for penile amputation. Hailed as a world’s first, a team of surgeons conducted the first successful penile transplant in Cape Town, South Africa in 2015. Despite the euphoria of this surgical victory, concerns about the use of this costly intervention in a context of severe resource constraints have been raised. In this paper, we explore some of the ethical implications of penile transplants as a clinical and public health response to the adverse consequences of traditional male circumcision. Given the current fiscal deficits in healthcare and public health sectors, how can one justify costly, high-technology interventions for conditions affecting a small section of the population? Since botched traditional male circumcisions are preventable, is a focus on penile transplantation as a form of treatment reasonable? Finally, do such interventions create undue expectations and false hope among a highly vulnerable and stigmatised group of young men? In this paper, we argue that given limited healthcare resources in South Africa and competing healthcare needs, prevention is a more appropriate response to botched traditional circumcisions than penile transplants
Viewing Research Participation as a Moral Obligation: In Whose Interests?
A moral paradigm shift has proposed for participation in health-related research. It’s not just a praiseworthy option, some say; it’s a social obligation. Recasting research participation in this way would have global ramifications, however. Who ultimately stands to gain the most from it, and who has the most to lose
Ethical Use of Antiretroviral Resources for HIV Prevention in Resource Poor Settings: Ethical Use of ARVs in Resource Poor Settings
The effectiveness of antiretroviral regimes (ARVs) to reduce risk of HIV transmission from mother to child and as post-exposure prophylaxis has been known for almost two decades. Recent research indicates ARVs can also reduce the risk of HIV transmission via sexual intercourse in two other ways. With pre-exposure prophylaxis (PrEP), ARVs are used to reduce risk of HIV acquisition among persons who are HIV negative and significantly exposed to the virus. With treatment as prevention (TasP), ARVs are used to reduce risk of HIV transmission from persons who are already HIV positive. The development of these new prevention strategies raises a rationing problem: given the chronic shortage of ARVs for HIV-infected persons in need of treatment, is it ethically justified to allocate ARVs for PrEP and/or TasP? This article examines the intuitively appealing view that allocation of ARVs for treatment should be the highest priority, the use of ARVs for TasP should be a secondary priority, and that utilizing ARVs for PrEP would be unethical. I will argue that selective, evidence-based allocation of ARVs for prevention in certain cases could be ethically justified even when there is insufficient anti-retroviral access for all those needing it for treatment
Desperately seeking targets: the ethics of routine HIV testing in low-income countries
The human immunodeficiency virus/acquired immune deficiency syndrome (HIV/AIDS) pandemic, and responses to it, have exposed clear political, social and economic inequities between and within nations. The most striking manifestations of this inequity is access to AIDS treatment. In affluent nations, antiretroviral treatment is becoming the standard of care for those with AIDS, while the same treatment is currently only available for a privileged few in most resource-poor countries. Patients without sufficient financial and social capital -- i.e., most people with AIDS -- die each day by the thousands. Recent AIDS treatment initiatives such as the UNAIDS and WHO "3 by 5" programme aim to rectify this symptom of global injustice. However, the success of these initiatives depends on the identification of people in need of treatment through a rapid and massive scale-up of HIV testing. In this paper, we briefly explore key ethical challenges raised by the acceleration of HIV testing in resource-poor countries, focusing on the 2004 policy of routine ("opt-out") HIV testing recommended by UNAIDS and WHO. We suggest that in settings marked by poverty, weak health-care and civil society infrastructures, gender inequalities, and persistent stigmatization of people with HIV/AIDS, opt-out HIV-testing policies may become disconnected from the human rights ideals that first motivated calls for universal access to AIDS treatment. We leave open the ethical question of whether opt-out policies should be implemented, but we recommend that whenever routine HIV-testing policies are introduced in resource-poor countries, that their effect on individuals and communities should be the subject of empirical research, human-rights monitoring and ethical scrutiny
Principlism, medical individualism, and health promotion in resource-poor countries: Can autonomy-based bioethics promote social justice and population health?
Abstract Through its adoption of the biomedical model of disease which promotes medical individualism and its reliance on the individual-based anthropology, mainstream bioethics has predominantly focused on respect for autonomy in the clinical setting and respect for person in the research site, emphasizing self-determination and freedom of choice. However, the emphasis on the individual has often led to moral vacuum, exaggeration of human agency, and a thin (liberal?) conception of justice. Applied to resource-poor countries and communities within developed countries, autonomy-based bioethics fails to address the root causes of diseases and public health crises with which individuals or communities are confronted. A sociological explanation of disease causation is needed to broaden principles of biomedical ethics and provides a renewed understanding of disease, freedom, medical practice, patient-physician relationship, risk and benefit of research and treatment, research priorities, and health policy
Experiences of those Taking Part in the BeeZee Bodies Family-Based Weight Management Intervention: A Qualitative Evaluation
The need for effective community, child weight management interventions continues. The BeeZee Bodies (BZB) family-based child weight management programme for 7-11-year-olds and 12-15–year-olds has been developed iteratively over five years, with quantitative and qualitative evaluations refining the programmes. The aim of this study was to present the experiences and opinions of those taking part in BZB programmes as part of a real world evaluation. Three focus groups, following a semi-structured protocol, were conducted with 20 participants (15 parents, 5 adolescents) 3 months post-intervention. Analyses were thematic, iterative and underpinned by Grounded Theory. Two themes emerged; (1) programme contents, (2) social interactions, with each sub-divided. Parents described increased appreciation of physical activity and dietary components, improvements in parenting and good relationships with personnel. A wide range of positive personal outcomes and changes within the family were perceived by parents and adolescents including: changes in physical activity take-up, eating habits, portion sizes, and an improved understanding of parenting an overweight child. The parenting skills element further enhanced the social cohesion fostered through attendance. There were opportunities to build new friendships for both parents and adolescents, and for parents to interact with their offspring in a different context, all of which supported behaviour change. The BZB programme was viewed by participants as successful and delivered by engaging personnel. Key strengths were social cohesion generated by including parenting sessions and inclusiveness of the physical activities on offer. BZB has been refined in response to qualitative evaluations and reviews and this process continues
Engaging with research ethics in central Francophone Africa: reflections on a workshop about ancillary care
Research ethics is predominantly taught and practiced in Anglophone countries, particularly those in North America and Western Europe. Initiatives to build research ethics capacity in developing countries must attempt to avoid imposing foreign frameworks and engage with ethical issues in research that are locally relevant. This article describes the process and outcomes of a capacity-building workshop that took place in Kinshasa, Democratic Republic of Congo in the summer of 2011. Although the workshop focused on a specific ethical theme – the responsibilities of researchers to provide health-related care to their research participants – we argue that the structure of the workshop offers a useful method for engaging with research ethics in general, and the theme of ancillary care encourages a broad perspective on research ethics that is highly pertinent in low-income countries. The workshop follows an interactive, locally driven model that could be fruitfully replicated in similar settings
Broadening community engagement in clinical research: Designing and assessing a pilot crowdsourcing project to obtain community feedback on an HIV clinical trial.
BACKGROUND/AIMS:Community engagement is widely acknowledged as an important step in clinical trials. One underexplored method for engagement in clinical trials is crowdsourcing. Crowdsourcing involves having community members attempt to solve a problem and then publicly sharing innovative solutions. We designed and conducted a pilot using a crowdsourcing approach to obtain community feedback on an HIV clinical trial, called the Acceptability of Combined Community Engagement Strategies Study. In this work, we describe and assess the Acceptability of Combined Community Engagement Strategies Study's crowdsourcing activities in order to examine the opportunities of crowdsourcing as a clinical trial community engagement strategy. METHODS:The crowdsourcing engagement activities involved in the Acceptability of Combined Community Engagement Strategies Study were conducted in the context of a phase 1 HIV antibody trial (ClinicalTrials.gov identifier: NCT03803605). We designed a series of crowdsourcing activities to collect feedback on three aspects of this clinical trial: the informed consent process, the experience of participating in the trial, and fairness/reciprocity in HIV clinical trials. All crowdsourcing activities were open to members of the general public 18 years of age or older, and participation was solicited from the local community. A group discussion was held with representatives of the clinical trial team to obtain feedback on the utility of crowdsourcing as a community engagement strategy for informing future clinical trials. RESULTS:Crowdsourcing activities made use of innovative tools and a combination of in-person and online participation opportunities to engage community members in the clinical trial feedback process. Community feedback on informed consent was collected by transforming the clinical trial's informed consent form into a series of interactive video modules, which were screened at an open public discussion. Feedback on the experience of trial participation involved designing three fictional vignettes which were then transformed into animated videos and screened at an open public discussion. Finally, feedback on fairness/reciprocity in HIV clinical trials was collected using a crowdsourcing idea contest with online and in-person submission opportunities. Our public discussion events were attended by 38 participants in total; our idea contest received 43 submissions (27 in-person, 16 online). Facebook and Twitter metrics demonstrated substantial engagement in the project. The clinical team found crowdsourcing primarily useful for enhancing informed consent and trial recruitment. CONCLUSION:There is sufficient lay community interest in open calls for feedback on the design and conduct of clinical trials, making crowdsourcing both a novel and feasible engagement strategy. Clinical trial researchers are encouraged to consider the opportunities of implementing crowdsourcing to inform trial processes from a community perspective
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