Does Islam influence biomedical research ethics? A review of the literature and guidelines, and an empirical qualitative study of stakeholder perceptions and ethical analysis

Islam, its texts and lived practice, finds growing importance within the global discourse on bioethics, as there is an increasing Muslim population and burgeoning interest in biomedical research and biotechnologies in the Muslim world. The aim of this thesis is to assess if and how Islam influences the ethical decision making of researchers, REC (researcher ethics committee) members, guideline developers and Islamic scholars in the biomedical research context.
I began addressing this question by first reviewing the literature that has been published to explore the role that Islam plays in the literature on biomedical research ethics. There is evidence that some Muslim countries have developed "Islamic" guidelines. That is, guidelines with the explicit aim of setting out Islamic values and stating their relevance to the ethics of research. A review of research guidelines employed within countries with a significant Muslim population, was carried out, to investigate the role of Islam in such guidelines. The literature and guideline review revealed that although international guidelines have been adapted to incorporate Islamic views, studies have shown that the latter are of limited practical application within a "Muslim country" setting. An empirical study was carried out in two case study sites to assess the extent to which Islam influences ethical decision making within the context of biomedical research. 56 semi-structured interviews were carried out in Malaysia (38) and Iran (18) with researchers, REC members, guideline developers and Islamic scholars to understand whether Islam influences what they consider to be an ethico-legal problem, and if the latter emerges, then how such issues are addressed.
The empirical study indicates five main conclusions. The first is that Islam and its institutional forms do impact ethical decision making in the day-to-day practice of biomedical research in countries with a Muslim population and/or in the research careers of Muslim researchers. Secondly, it shows that there are many distinctive mechanisms, such as the involvement of Islamic scholars, the process of ijtihad (independent reasoning) and the production of fatawah (legal edicts), by which Islam does identify and develop ethical views about biomedical matters. Thirdly, HIV/AIDS poses major challenges to the world of Islam as it does the rest of world. The epidemic raises issues that touch on cultural sensitivities that are important to Islamic societies and this study has shown that no simple or single response was observed to the ethical issues arising from HIV/AIDS. Fourthly, researchers face practical challenges when deliberating women’s autonomy in contexts where Islam is appropriated within “male dominated” contexts. The role and status of women is disputed in such contexts with views ranging from women needing their husband’s permission to leave the home to men and women having equal freedoms. Finally, this study describes and analyses how the personal faith of researchers and their deep commitment to Islamic ethics and law influences their understanding of their legal and moral accountability and ethico-legal decision making. It shows that researchers adopt multiple roles and are required to balance numerous value systems and priorities and face moral anxiety and frustration when these different moral sources are in conflict. Overall, this study indicates that, in the countries studied, Islam does influence biomedical research ethics, and that this can be appreciated through the growing reference to Islam and its scriptural sources in biomedical research ethics literature, research ethics guidelines and the role of Islam in the day-to-day practice of biomedical researchers in the case study sites, that has been captured in the empirical study.

Keywords: HIV/AIDS
Ethics
Human
Personal faith
Moral perception
Research
Moral particularity
Women
Universalism
Relativism
Advisor: Parker, M
Fitzpatrick, R