In Brazil, social science research ethics is a field still under construction and subject to intense dispute. The aim of this paper is to discuss how accepted principles of biomedical research ethics can be incorporated into the ethical review of social sciences, particularly open interviews, ethnographic research, and participant observation. The paper uses a case study—the ethnographic documentary "Severina's Story"—as the basis for analysis of the methodological and ethical issues raised in social science research. To promote ethical social science research, (...) based on principles such as human rights and the protection of vulnerable populations, institutional review boards must be sensitive to the epistemological and methodological particularities of all fields of human subjects research. (shrink)

In Brazil, social science research ethics is a field still under construction and subject to intense dispute. The aim of this paper is to discuss how accepted principles of biomedical research ethics can be incorporated into the ethical review of social sciences, particularly open interviews, ethnographic research, and participant observation. The paper uses a case study—the ethnographic documentary "Severina's Story"—as the basis for analysis of the methodological and ethical issues raised in social science research. To promote ethical social science research, (...) based on principles such as human rights and the protection of vulnerable populations, institutional review boards must be sensitive to the epistemological and methodological particularities of all fields of human subjects research. (shrink)

In Brazil, social science research ethics is a field still under construction and subject to intense dispute. The aim of this paper is to discuss how accepted principles of biomedical research ethics can be incorporated into the ethical review of social sciences, particularly open interviews, ethnographic research, and participant observation. The paper uses a case study—the ethnographic documentary Severina’s Story—as the basis for analysis of the methodological and ethical issues raised in social science research. To promote ethical social science research, (...) based on principles such as human rights and the protection of vulnerable populations, institutional review boards must be sensitive to the epistemological and methodological particularities of all fields of human subjects research. (shrink)

The Convention on Biological Diversity and its Nagoya Protocol established an Access and Benefit Sharing system between utilizers and providers of genetic resources. ABS is understood as a tool that should promote commutative justice between the involved parties. This essay discusses what exactly it is that is being exchanged in the ABS process. It critically analyses moral claims to compensation that are implied by the ABS system for genetic resources. It argues that with the exception of cases in which traditional (...) knowledge is involved, states are not automatically entitled to compensation in return for the utilization of genetic resources growing within their territory. However, biodiversity-rich states that make an effort to protect biodiversity must be compensated for complying with the requests set out in the CBD. Although it acknowledges that the NP is a step towards recognizing this claim, this essay argues that ABS is not the appropriate method to compensate for biodivers... (shrink)

“Fair and equitable benefit-sharing” is one of the objectives of the UN Convention on Biological Diversity and the FAO International Treaty on Plant Genetic Resources for Food and Agriculture. In essence, benefit-sharing holds that countries, farmers, and indigenous communities that grant access to their plant genetic resources and/or traditional knowledge should share in the benefits that users derive from these resources. But what exactly is understood by “fair” and “equitable” in this context? Neither term is defined in the international treaties. (...) A complicating factor, furthermore, is that different motivations and perspectives exist with respect to the notion of benefit-sharing itself. This paper looks at six different approaches to benefit-sharing that can be extracted from the current debates on “Access and Benefit-Sharing.” These approaches form the basis of a philosophical reflection in which the different connotations of “fair and equitable” are considered, by analyzing the main principles of justice involved. Finally, the various principles are brought together in order to draw some conclusions as to how a fair and equitable benefit-sharing mechanism might best be realized. This results in several recommendations for policymakers. (shrink)

The concept of benefit sharing pertains to the act of giving something in return to the participants, communities, and the country that have participated in global health research or bioprospecting activities. One of the key concerns of benefit sharing is the ethical justifications or reasons to support the practice of the concept in global health research and bioprospecting. This article evaluates one of such ethical justifications and its meaning to benefit sharing, namely justice. We conducted a systematic review to map (...) the various principles of justice that are linked to benefit sharing and analysed their meaning to the concept of benefit sharing. Five principles of justice have been shown to be relevant in the nuances of benefit sharing in both global health research and bioprospecting. The review findings indicate that each of these principles of justice provides a different perspective for a different benefit sharing rationale. For example, commutative justice provides a benefit sharing rationale that is focused on fair exchange of benefits between research sponsors and communities. Distributive justice produces a benefit sharing rationale that is focused on improving the health needs of the vulnerable research communities. We have suggested that a good benefit sharing framework particularly in global health research would be more beneficial if it combines all the principles of justice in its formulation. Nonetheless, there is a need for empirical studies to examine the various principles of justice and their nuances in benefit sharing among stakeholders in global health research. (shrink)

The concept of benefit sharing has been a topical issue on the international stage for more than two decades, gaining prominence in international law, research ethics and political philosophy. In spite of this prominence, the concept of benefit sharing is not devoid of controversies related to its definition and justification. This article examines the discourses and justifications of benefit sharing concept.

Biobanking is a relatively new concept in Egypt. Building a good relationship with different stakeholders is essential for the social sustainability of biobanks. To establish this relationship, it is necessary to assess the attitude of different groups towards this concept. The objective of this work is to assess the knowledge, attitude, and opinions of Egyptian patients towards biobanking issues. We designed a structured survey to be administered to patients coming to the outpatient clinics in 3 university hospitals in Egypt. The (...) survey included questions estimating the level of knowledge about the term “Biobank”, together with questions about the attitudes and opinions about related issues. Two hundred and fifty-nine patients participated in the survey. Eighty-one percent of participants reported that they never heard about the term before. About 85% expressed that they would be willing to donate their samples for research and about 87% thought that sample donation did not contradict their religious beliefs. Fifty eight percent were willing to participate in a genetic research project, 27.8% supported sharing their sample with pharmaceutical companies, and 32.4% agreed to share their samples with institutions abroad. Although there is limited knowledge about biobanking among Egyptian patients, many had a positive attitude towards sample donation and didn’t show religious concerns against it. However, they showed concerns regarding participation in genetic research and with sharing their samples across borders or with pharmaceutical companies. Public education about biobanking is possible, taking into consideration the specific cultural and legal framework in Egypt. (shrink)