Islamic Ethics and Genomics: Mapping the Collective Deliberations of Muslim Religious Scholars and Biomedical Scientists

Abstract

When the Human Genome Project (HGP) took off in 1990, experts in the field were aware of the fact that this scientific megaproject would generate ethical questions and conundrums that should be taken seriously.2 So, an ethical arm for the HGP was established, namely the Ethical, Legal and Social Implications (ELSI) program. Five percent of the total HGP budget was dedicated to the ELSI program, making the project one of the largest-ever investments in bioethics research. Unlike most of the previous bioethics research, the ELSI program worked in conjunction with the scientific research activities. Rather than waiting for the results of the scientific research and their possible ethical implications, the HGP leadership decided to anticipate, identify, analyze and address the ethical concerns early on. The HGP example of conflating genomics with ethics concurrently became a to-be-followed model, sometimes with critical remarks, for subsequent genomics projects conducted elsewhere. Major research funding organizations, such as the Wellcome Trust and the UK Economic and Social Research Council, have also set a financial plan for research on genomics-related ethical issues (Rabinow and Bennett 2009, 106;