Islamic ethics and genomics: Mapping the collective deliberations of Muslim religious scholars and biomedical scientists

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; Jasanoff 2011, 7; Boddington 2012, 24-25; Kaye 2012, 673–674; Green et al 2015, 31; Morrison, Dickenson and Lee 2016, 1-6)