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

Ethics in practice: the state of the debate on promoting the social value of global health research in resource poor settings particularly Africa

<p>Abstract</p> <p>Background</p> <p>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.</p> <p>Methods</p> <p>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.</p> <p>Results</p> <p>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.</p> <p>Conclusion</p> <p>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.</p

Drying High Moisture Alfalfa Hay

We all recognize the value of alfalfa in horse, dairy and beef rations. That\u27s why we harvest over 17 million acres of this crop in the United States every year. Hay is a good way to harvest alfalfa because it stores well, provides long fiber in rations and we can market the surplus as a cash crop. Higher yields and higher quality mean more profit so we push to be sure we use the best management practices. All too often though, we lose part of all of a crop to rain damage. Some yield and quality is lost due to leaf shatter and respiration no matter how ideal the conditions. The goal of our research program is to develop hay harvesting and storage systems that minimize these losses at the lowest possible cost

The Masses and Shapes of Dark Matter Halos from Galaxy-Galaxy Lensing in the CFHTLS

We present the first galaxy-galaxy weak lensing results using early data from the Canada-France-Hawaii Telescope Legacy Survey (CFHTLS). These results are based on ~22 sq. deg. of i' data. From this data, we estimate the average velocity dispersion for an L* galaxy at a redshift of 0.3 to be 137 +- 11 km/s, with a virial mass, M_{200}, of 1.1 +- 0.2 \times 10^{12} h^{-1} Msun and a rest frame R-band mass-to-light ratio of 173 +- 34 h Msun/Lsun. We also investigate various possible sources of systematic error in detail. Additionally, we separate our lens sample into two sub-samples, divided by apparent magnitude, thus average redshift. From this early data we do not detect significant evolution in galaxy dark matter halo mass-to-light ratios from a redshift of 0.45 to 0.27. Finally, we test for non-spherical galaxy dark matter halos. Our results favor a dark matter halo with an ellipticity of ~0.3 at the 2-sigma level when averaged over all galaxies. If the sample of foreground lens galaxies is selected to favor ellipticals, the mean halo ellipticity and significance of this result increase.Comment: 12 pages, 11 figures, accepted to ApJ, uses emulateap

Improving Communication between Doctors and Parents after Newborn Screening

Background: Newborn screening (NBS) enables early treatment, and some consider it a natural vehicle for genetic screening. Bioethicists argue for caution since families of infants with carrier status can develop psychosocial complications. This paper describes the methods and feasibility of Wisconsin’s statewide project for quality improvement of communication and psychosocial outcomes after NBS. Methods: When NBS identifies carrier status for cystic fibrosis or sickle cell, we contact primary care providers (PCPs), answer questions, and invite them to rehearse informing the parents. Three months later, we telephone the parents, assess knowledge and psychosocial outcomes, provide counseling, and assist with self-referral to further resources. Afterward, evaluation surveys are provided to the parents, to be returned anonymously. Results: Birthing facilities provided accurate PCP names for 73% of 817 infants meeting inclusion criteria; we identified PCPs for 21% more. We reached 47.3% of PCPs in time to invite a rehearsal; 60% of these accepted. We successfully called 50.2% of eligible parents; 61% recalled a PCP explanation, and 48.5% evaluated the explanation favorably. Evaluations by parents with limited health literacy were less favorable. Conclusion: It is feasible to follow parents for psychosocial outcomes after NBS. Preliminary data about communication is mixed, but further data will describe psychosocial outcomes and investigate outcomes’ associations with communication

A Classification System for Teachers’ Motivational Behaviours Recommended in Self-Determination Theory Interventions

Teachers’ behaviour is a key factor that influences students’ motivation. Many theoretical models have tried to explain this influence, with one of the most thoroughly researched being self-determination theory (SDT). We used a Delphi method to create a classification of teacher behaviours consistent with SDT. This is useful because SDT-based interventions have been widely used to improve educational outcomes. However, these interventions contain many components. Reliably classifying and labelling those components is essential for implementation, reproducibility, and evidence synthesis. We used an international expert panel (N = 34) to develop this classification system. We started by identifying behaviours from existing literature, then refined labels, descriptions, and examples using the Delphi panel’s input. Next, the panel of experts iteratively rated the relevance of each behaviour to SDT, the psychological need that each behaviour influenced, and its likely effect on motivation. To create a mutually exclusive and collectively exhaustive list of behaviours, experts nominated overlapping behaviours that were redundant, and suggested new ones missing from the classification. After three rounds, the expert panel agreed upon 57 teacher motivational behaviours that were consistent with SDT. For most behaviours (77%), experts reached consensus on both the most relevant psychological need and influence on motivation. Our classification system provides a comprehensive list of teacher motivational behaviours and consistent terminology in how those behaviours are labelled. Researchers and practitioners designing interventions could use these behaviours to design interventions, to reproduce interventions, to assess whether these behaviours moderate intervention effects, and could focus new research on areas where experts disagree