RACE,SCIENCE AND A NOVEL: AN INTERDISCIPLINARY DIALOGUE

In the novel Racists by Kunal Basu (2006), two competing scientists initiate an experiment that they believe will prove which race is superior. The research subjects, one white and one black infant, are sequestered on an isolated island in the care of a mute nurse. The contest must be waged in a ‘natural laboratory’ with no artificial interventions and with the prospect that one will die at the hands of the other. The politics of empire, the slave trade and the advent of a new scientific way of viewing life, Darwinism, set the stage for the fictional experiment, but the ramifications of such thinking extend into the present. Coming from the disciplines of nursing, philosophy and science, we discuss how a novel can illuminate the moral dimensions of science and healthcare. The critical distance afforded by the novel provides a rich terrain for the examination of issues such as race, care and the purity of science. Despite the recent dominance of social explanations of race, science requires the examination of the differences between human beings at the biological level. The view that biology is destiny is a powerful one with dangerous consequences, especially since the belief that certain human beings' destinies are far worthier than others is a corollary of such a view. In this paper, we present the cross‐disciplinary conversation, which has been facilitated by this novel. We hope this will inform ethics educators of the rich potential of using fiction as a pedagogical tool.     

WHAT DO ISLAMIC INSTITUTIONAL FATWAS SAY ABOUT MEDICAL AND RESEARCH CONFIDENTIALITY AND BREACH OF CONFIDENTIALITY?

Protecting confidentiality is an essential value in all human relationships, no less in medical practice and research.(1) Doctor-patient and researcher-participant relationships are built on trust and on the understanding those patients' secrets will not be disclosed.(2) However, this confidentiality can be breached in some situations where it is necessary to meet a strong conflicting duty.(3) Confidentiality, in a general sense, has received much interest in Islamic resources including the Qur'an, Sunnah and juristic writings. However, medical and research confidentiality have not been explored deeply. There are few fatwas about the issue, despite an increased effort by both individuals and Islamic medical organizations to use these institutional fatwas in their research. Infringements on confidentiality make up a significant portion of institutional fatwas, yet they have never been thoroughly investigated. Moreover, the efforts of organizations and authors in this regard still require further exploration, especially on the issue of research confidentiality. In this article, we explore medical and research confidentiality and potential conflicts with this practice as a result of fatwas released by international, regional, and national Islamic Sunni juristic councils. We discuss how these fatwas affect research and publication by Muslim doctors, researchers, and Islamic medical organizations. We argue that more specialized fatwas are needed to clarify Islamic juristic views about medical and research confidentiality, especially the circumstances in which infringements on this confidentiality are justified.     

Clinical research law in Jordan: an ethical analysis

An ethical analysis of Jordan's Clinical Research Law, which became effective in 2001, was performed. Accordingly, this paper discusses the major components, key strengths and weaknesses of this law. As an initial effort, the Law addresses important aspects of research ethics and, hence, should serve as an example for other Arab Countries in the Middle East. Unique aspects of the Law include the requirement that those conducting any study have insurance that can compensate for research injuries and a system of fines and punishments for noncompliance with the Law. There are, however, some key items missing in the Jordanian Law. For example, the Law does not mention the requirement of a favourable assessment of risks and benefits, the fair selection of subjects, or articles regarding the protection of the rights and welfare of children and other vulnerable subjects participating in research. The paper concludes with the suggestion that new amendments should be considered for future revisions of the Clinical Research Law in Jordan.     

BENEFITS TO RESEARCH SUBJECTS IN INTERNATIONAL TRIALS: DO THEY REDUCE EXPLOITATION OR INCREASE UNDUE INDUCEMENT?

There is an alleged tension between undue inducement and exploitation in research trials. This paper considers claims that increasing the benefits to research subjects enrolled in international, externally‐sponsored clinical trials should be avoided on the grounds that it may result in the undue inducement of research subjects. It proceeds from the premise that there are good grounds for thinking that, at least some, international research sponsors exploit trial participants because they do not provide the research population with a fair share of the benefits of research. This provides a prima facie argument for increasing the benefits for research participants. Concern over undue inducement is a legitimate moral concern; however, if this concern is to prevent research populations from receiving their fair share of benefits from research there must be sufficient evidence that these benefits will unduly influence patients’ decision‐making regarding trial participation. This article contributes to the debate about exploitation versus undue inducement by introducing an analysis of the available empirical research into research participants’ motivations and the influence of payments on research subjects’ behaviour and risk assessment. Admittedly, the available research in this field is limited, but the research that has been conducted suggests that financial rewards do not distort research subjects’ behaviour or blind them to the risks involved with research. Therefore, I conclude that research sponsors should prioritise the prevention of exploitation in international research by providing greater benefits to research participants.