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1.  Consulting communities on feedback of genetic findings in international health research: sharing sickle cell disease and carrier information in coastal Kenya 
BMC Medical Ethics  2013;14:41.
Background
International health research in malaria-endemic settings may include screening for sickle cell disease, given the relationship between this important genetic condition and resistance to malaria, generating questions about whether and how findings should be disclosed. The literature on disclosing genetic findings in the context of research highlights the role of community consultation in understanding and balancing ethically important issues from participants’ perspectives, including social forms of benefit and harm, and the influence of access to care. To inform research practice locally, and contribute to policy more widely, this study aimed to explore the views of local residents in Kilifi County in coastal Kenya on how researchers should manage study-generated information on sickle cell disease and carrier status.
Methods
Between June 2010 and July 2011, we consulted 62 purposively selected Kilifi residents on how researchers should manage study-generated sickle cell disease findings. Methods drew on a series of deliberative informed small group discussions. Data were analysed thematically, using charts, to describe participants’ perceptions of the importance of disclosing findings, including reasoning, difference and underlying values. Themes were derived from the underlying research questions and from issues emerging from discussions. Data interpretation drew on relevant areas of social science and bioethics literature.
Results
Perceived health and social benefits generated strong support for disclosing findings on sickle cell disease, but the balance of social benefits and harms was less clear for sickle cell trait. Many forms of health and social benefits and harms of information-sharing were identified, with important underlying values related to family interests and the importance of openness. The influence of micro and macro level contextual features and prioritization of values led to marked diversity of opinion.
Conclusions
The approach demonstrates a high ethical importance in many malaria endemic low-to-middle income country settings of disclosing sickle cell disease findings generated during research, alongside provision of effective care and locally-informed counselling. Since these services are central to the benefits of disclosure, health researchers whose studies include screening for sickle cell disease should actively promote the development of health policy and services for this condition in situations of unmet need, including through the prior development of collaborative partnerships with government health managers and providers. Community consultation can importantly enrich ethical debate on research practice where in-depth exploration of informed views and the potential for difference are taken into account.
doi:10.1186/1472-6939-14-41
PMCID: PMC4016314  PMID: 24125465
Kenya; Africa; Sickle cell disease; Community consultation; Genetic findings; Genetic and genomics research; Deliberative methods; Empirical ethics
2.  Investigating the potential for ethnic group harm in collaborative genomics research in Africa: Is ethnic stigmatisation likely? 
Social science & medicine (1982)  2012;75(8):1400-1407.
A common assumption in genomics research is that the use of ethnic categories has the potential to lead to ethnic stigmatisation – particularly when the research is done on minority populations. Yet few empirical studies have sought to investigate the relation between genomics and stigma, and fewer still with a focus on Africa. In this paper, we investigate the potential for genomics research to lead to harms to ethnic groups. We carried out 49 semi-structured, open-ended interviews with stakeholders in a current medical genomics research project in Africa, MalariaGEN. Interviews were conducted with MalariaGEN researchers, fieldworkers, members of three ethics committees who reviewed MalariaGEN project proposals, and with members of the two funding bodies providing support to the MalariaGEN project. Interviews were conducted in Kenya, The Gambia and the UK between June 2008 and October 2009. They covered a range of aspects relating to the use of ethnicity in the genomics project, including views on adverse effects of the inclusion of ethnicity in such research. Drawing on the empirical data, we argue that the risk of harm to ethnic groups is likely to be more acute in specific types of genomics research. We develop a typology of research questions and projects that carry a greater risk of harm to the populations included in genomics research. We conclude that the potential of generating harm to ethnic groups in genomics research is present if research includes populations that are already stigmatised or discriminated against, or where the research investigates questions with particular normative implications. We identify a clear need for genomics researchers to take account of the social context of the work they are proposing to do, including understanding the local realities and relations between ethnic groups, and whether diseases are already stigmatised.
doi:10.1016/j.socscimed.2012.05.020
PMCID: PMC3632260  PMID: 22749442
Africa; Kenya; The Gambia; Ethnicity; Stigma; Genomics; MalariaGEN
3.  Forms of benefit sharing in global health research undertaken in resource poor settings: a qualitative study of stakeholders' views in Kenya 
Background
Increase in global health research undertaken in resource poor settings in the last decade though a positive development has raised ethical concerns relating to potential for exploitation. Some of the suggested strategies to address these concerns include calls for providing universal standards of care, reasonable availability of proven interventions and more recently, promoting the overall social value of research especially in clinical research. Promoting the social value of research has been closely associated with providing fair benefits to various stakeholders involved in research. The debate over what constitutes fair benefits; whether those that addresses micro level issues of justice or those focusing on the key determinants of health at the macro level has continued. This debate has however not benefited from empirical work on what stakeholders consider fair benefits. This study explores practical experiences of stakeholders involved in global health research in Kenya, over what benefits are fair within a developing world context.
Methods and results
We conducted in-depth interviews with key informants drawn from within the broader health research system in Kenya including researchers from the mainstream health research institutions, networks and universities, teaching hospitals, policy makers, institutional review boards, civil society organisations and community representative groups.
The range of benefits articulated by stakeholders addresses both micro and macro level concerns for justice by for instance, seeking to engage with interests of those facilitating research, and the broader systemic issues that make resource poor settings vulnerable to exploitation. We interpret these views to suggest a need for global health research to engage with current crises that face people in these settings as well as the broader systemic issues that produce them.
Conclusion
Global health research should provide benefits that address both the micro and macro level issues of justice in order to forestall exploitation. Embracing the two is however challenging in terms of how the various competing interests/needs should be balanced ethically, especially in the absence of structures to guide the process. This challenge should point to the need for greater dialogue to facilitate value clarification among stakeholders.
doi:10.1186/1747-5341-7-7
PMCID: PMC3274462  PMID: 22251457
4.  Ethics in practice: the state of the debate on promoting the social value of global health research in resource poor settings particularly Africa 
BMC Medical Ethics  2011;12:22.
Background
Promoting the social value of global health research undertaken in resource poor settings has become a key concern in global research ethics. The consideration for benefit sharing, which concerns the elucidation of what if anything, is owed to participants, their communities and host nations that take part in such research, and the obligations of researchers involved, is one of the main strategies used for promoting social value of research. In the last decade however, there has been intense debate within academic bioethics literature seeking to define the benefits, the beneficiaries, and the scope of obligations for providing these benefits. Although this debate may be indicative of willingness at the international level to engage with the responsibilities of researchers involved in global health research, it remains unclear which forms of benefits or beneficiaries should be considered. International and local research ethics guidelines are reviewed here to delineate the guidance they provide.
Methods
We reviewed documents selected from the international compilation of research ethics guidelines by the Office for Human Research Protections under the US Department of Health and Human Services.
Results
Access to interventions being researched, the provision of unavailable health care, capacity building for individuals and institutions, support to health care systems and access to medical and public health interventions proven effective, are the commonly recommended forms of benefits. The beneficiaries are volunteers, disease or illness affected communities and the population in general. Interestingly however, there is a divide between "global opinion" and the views of particular countries within resource poor settings as made explicit by differences in emphasis regarding the potential benefits and the beneficiaries.
Conclusion
Although in theory benefit sharing is widely accepted as one of the means for promoting the social value of international collaborative health research, there is less agreement amongst major guidelines on the specific responsibilities of researchers over what is ethical in promoting the social value of research. Lack of consensus might have practical implications for efforts aimed at enhancing the social value of global health research undertaken in resource poor settings. Further developments in global research ethics require more reflection, paying attention to the practical realities of implementing the ethical principles in real world context.
doi:10.1186/1472-6939-12-22
PMCID: PMC3225323  PMID: 22085702
5.  Stakeholders understanding of the concept of benefit sharing in health research in Kenya: a qualitative study 
BMC Medical Ethics  2011;12:20.
Background
The concept of benefit sharing to enhance the social value of global health research in resource poor settings is now a key strategy for addressing moral issues of relevance to individuals, communities and host countries in resource poor settings when they participate in international collaborative health research.
The influence of benefit sharing framework on the conduct of collaborative health research is for instance evidenced by the number of publications and research ethics guidelines that require prior engagement between stakeholders to determine the social value of research to the host communities. While such efforts as the production of international guidance on how to promote the social value of research through such strategies as benefit sharing have been made, the extent to which these ideas and guidelines have been absorbed by those engaged in global health research especially in resource poor settings remains unclear. We examine this awareness among stakeholders involved in health related research in Kenya.
Methods
We conducted in-depth interviews with key informants drawn from within the broader health research system in Kenya including researchers from the mainstream health research institutions, networks and universities, teaching hospitals, policy makers, institutional review boards, civil society organisations and community representative groups.
Results
Our study suggests that although people have a sense of justice and the moral aspects of research, this was not articulated in terms used in the literature and the guidelines on the ethics of global health research.
Conclusion
This study demonstrates that while in theory several efforts can be made to address the moral issues of concern to research participants and their communities in resource poor settings, quick fixes such as benefit sharing are not going to be straightforward. We suggest a need to pay closer attention to the processes through which ethical principles are enacted in practice and distil lessons on how best to involve individuals and communities in promoting ethical conduct of global health research in resource poor settings.
doi:10.1186/1472-6939-12-20
PMCID: PMC3200159  PMID: 21961798
6.  A comprehensive evaluation of the impact of telemonitoring in patients with long-term conditions and social care needs: protocol for the whole systems demonstrator cluster randomised trial 
Background
It is expected that increased demands on services will result from expanding numbers of older people with long-term conditions and social care needs. There is significant interest in the potential for technology to reduce utilisation of health services in these patient populations, including telecare (the remote, automatic and passive monitoring of changes in an individual's condition or lifestyle) and telehealth (the remote exchange of data between a patient and health care professional). The potential of telehealth and telecare technology to improve care and reduce costs is limited by a lack of rigorous evidence of actual impact.
Methods/Design
We are conducting a large scale, multi-site study of the implementation, impact and acceptability of these new technologies. A major part of the evaluation is a cluster-randomised controlled trial of telehealth and telecare versus usual care in patients with long-term conditions or social care needs. The trial involves a number of outcomes, including health care utilisation and quality of life. We describe the broad evaluation and the methods of the cluster randomised trial
Discussion
If telehealth and telecare technology proves effective, it will provide additional options for health services worldwide to deliver care for populations with high levels of need.
Trial Registration
Current Controlled Trials ISRCTN43002091
doi:10.1186/1472-6963-11-184
PMCID: PMC3169462  PMID: 21819569
8.  Attitudes of patients with anorexia nervosa to compulsory treatment and coercion 
Background
The compulsory treatment of anorexia nervosa is a contentious issue. Research suggests that patients are often subject to compulsion and coercion even without formal compulsory treatment orders. Research also suggests that patients suffering from anorexia nervosa can change their minds in retrospect about compulsion.
Methods
Qualitative interviewing methods were used to explore the views of 29 young women concerning compulsion and coercion in the treatment of anorexia nervosa. The participants were aged between 15 to 26 years old, and were suffering or had recently suffered from anorexia nervosa at the time of interview.
Results
Compulsion and formal compulsory treatment of anorexia nervosa were considered appropriate where the condition was life-threatening. The perception of coercion was moderated by relationships. What mattered most to participants was not whether they had experienced restriction of freedom or choice, but the nature of their relationships with parents and mental health professionals.
Conclusions
People with anorexia nervosa appear to agree with the necessity of compulsory treatment in order to save life. The perception of coercion is complex and not necessarily related to the degree of restriction of freedom.
doi:10.1016/j.ijlp.2009.10.003
PMCID: PMC2808473  PMID: 19926134
Anorexia nervosa; Compulsory treatment; Coercion; Patients' views; Qualitative interview study
9.  Psychiatrists' attitudes towards autonomy, best interests and compulsory treatment in anorexia nervosa: a questionnaire survey 
Background
The compulsory treatment of anorexia nervosa is a contentious issue. Research suggests that psychiatrists have a range of attitudes towards patients suffering from anorexia nervosa, and towards the use of compulsory treatment for the disorder.
Methods
A postal self-completed attitudinal questionnaire was sent to senior psychiatrists in the United Kingdom who were mostly general adult psychiatrists, child and adolescent psychiatrists, or psychiatrists with an interest in eating disorders.
Results
Respondents generally supported a role for compulsory measures under mental health legislation in the treatment of patients with anorexia nervosa. Compared to 'mild' anorexia nervosa, respondents generally were less likely to feel that patients with 'severe' anorexia nervosa were intentionally engaging in weight loss behaviours, were able to control their behaviours, wanted to get better, or were able to reason properly. However, eating disorder specialists were less likely than other psychiatrists to think that patients with 'mild' anorexia nervosa were choosing to engage in their behaviours or able to control their behaviours. Child and adolescent psychiatrists were more likely to have a positive view of the use of parental consent and compulsory treatment for an adolescent with anorexia nervosa. Three factors emerged from factor analysis of the responses named: 'Support for the powers of the Mental Health Act to protect from harm'; 'Primacy of best interests'; and 'Autonomy viewed as being preserved in anorexia nervosa'. Different scores on these factor scales were given in terms of type of specialist and gender.
Conclusion
In general, senior psychiatrists tend to support the use of compulsory treatment to protect the health of patients at risk and also to protect the welfare of patients in their best interests. In particular, eating disorder specialists tend to support the compulsory treatment of patients with anorexia nervosa independently of views about their decision-making capacity, while child and adolescent psychiatrists tend to support the treatment of patients with anorexia nervosa in their best interests where decision-making is impaired.
doi:10.1186/1753-2000-2-40
PMCID: PMC2649038  PMID: 19091113

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