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Islamic ethics and the healthcare of children in the genetics era

Islamic ethics and the healthcare of children in the genetics era

Mohammed Ghaly, Maha El Akoum, Fowzan Alkuraya, Mashael Al-Shafai, Samya Ahmad Al-Abdulla, Khalid Fakhro, Tawfeg ben Omran

Advancements in genetics and genomics have provided great opportu- nities for improving children’s health and the overall wellbeing of their families. These opportunities, however, are often intertwined with complex ethical questions and challenges that need to be examined in light of people’s moral and religio-ethical convictions. This report focuses on the ethical questions triggered by four main types of genetic testing, namely: premarital; preimplantation; prenatal; and newborn. From the 1990s onward, Muslim religious scholars and biomedical scientists, with the help of transnational Islamic institutions, have been engaged in intensive deliberations on the ethical aspects of genetics and genomics, including these tests. The analyses, recom- mendations and conclusions provided in this study are based on extensive and critical reading of these deliberations. To put the Islamic bioethical perspectives in their broader context, we also included a multidisciplinary review of the latest biomedical knowledge and the relevant international bioethical discourse.

Executive Summary

The genetic tests that can be performed before marriage, before implanting embryos, during pregnancy, or after birth have offered new opportunities to manage the risks of having children with genetic disorders and the associated financial and social burdens. Like other communities worldwide, many Muslims want to pursue the benefits of these tests but in a way that aligns with their religious beliefs and moral convictions. Since the beginning of the 1990s, Muslim religious scholars, in collaboration with biomedical scientists, have been examining the ethical questions surrounding genetic testing.

This report provides an analytical review of these decades-long Islamic bioethical deliberations. It provides a systematic overview of the Islamic perspectives on four main types of genetic testing: premarital; preimplantation; prenatal; and newborn.

Section 1 outlines the related biomedical aspects and key ethical questions, as highlighted in the international bioethical discourse. Section 2 is dedicated to analyzing the Islamic ethical perspectives and how they can be translated into actionable guidelines. Section 3 provides a number of conclusions and policy recommendations, which we hope will aid policymakers, care providers, and couples in navigating these issues from an Islamic ethics perspective.