In the annals of modern biomedical sciences, the Human Genome Project (HGP) stands as a seminal milestone, wielding profound influence over the scientific landscape and catalyzing what has come to be known as the “genomic revolution” (Yudell & DeSalle, 2002). In the context of this study, the exceptional significance of this colossal undertaking unfolds across three dimensions, illustrating its impact on the genomic revolution, particularly in realms extending beyond the confines of the Western world.

The first dimension pertains to its profound contribution to the expansive realm of biomedical sciences. Thanks to the information generated by the HGP and the resulting knowledge, man became able to profoundly identify the human body at the genetic level, a milestone unprecedented in history. Beyond the traditional understanding of the human body as an amalgamation of organs and tissues (phenotype), the genetic composition (genotype) of the body was pinpointed with remarkable precision. This advancement gave rise to compelling arguments supporting the notion that the genotype serves as the foundational framework for the phenotype, exerting influence, and possibly determining its functioning. Leaders of the HGP underscore its multifaceted impact on biomedical sciences, ushering in a new era by facilitating the unraveling of molecular mechanisms underlying myriad diseases, spearheading a revolution in cancer diagnosis and treatment, fostering the maturation of microbiome science, and integrating stem-cell therapies into routine medical practices (Collins, 2003; Green et al., 2015, p. 31).

Closely intertwined with the preceding one, the second dimension delves into the realms of “precision medicine" and “personalized medicine.” Thanks to the HGP and advancements in genetics and genomics, a clear understanding emerged that the genetic makeup of the human body varies from one individual to another. This diversity elucidates the distinct responses individuals exhibit to prescribed drugs for treating diseases or recommendations for diet and lifestyle modifications aimed at enhancing overall health. Achieving precision in medicine would thus necessitate customization, tailoring medical approaches to each individual’s unique genetic profile. Comprehensive insights into genomic diversity across diverse populations and ethnicities worldwide demand extensive genome mapping and sequencing data. Relying solely on genomic research in the leading countries in biomedical sciences, primarily concentrated in the Western world, proved insufficient. Hence, there is an imperative need to explore the genomes of diverse populations globally (Collins, 2011; Green et al., 2015, p. 30).

The third dimension has to do with the intersection of genomics and morality. The HGP and the genomic revolution unequivocally showcased that genomics transcends being a mere scientific enterprise focused on examining the human body. It holds direct relevance to decades-long discussions on human nature, giving rise to a spectrum of intricate ethical questions. Before the HGP, the conventional trajectory entailed that ethical concerns are to be addressed after substantial scientific advancements had occurred, subsequently triggering dilemmas and challenges.

In the case of the HGP, it became evident from its inception that inevitable challenges and dilemmas would emerge, including the imperative to safeguard people’s privacy and protect them from genetic discrimination. These scientific advances also underscored the necessity of reexamining fundamental concepts shaping people’s moral worlds, such as health, sickness, well-being, free will vs. determinism, and what distinguishes us as human beings, among others (Hochschild, 2021; Juengst, 1991; Meslin et al., 1997; Peters, 2014; Reardon, 2017). The intertwining of genomics and ethics was explicitly articulated by James Watson, the founding director of the HGP, who succinctly expressed the project’s overarching goal as “to find out what being human is” (Cole-Turner, 1992, p. 161). To grapple with these issues, the HGP established a dedicated ethical arm known as the Ethical, Legal and Social Implications (ELSI) program. Allocated 5% of the NIH budget, the ELSI program stood as the largest public investment in bioethical analysis at that time. The fusion of genomics and ethics, pioneered by the ELSI model of the HGP, gradually became the standard for subsequent research projects conducted in other countries, including Canada and the United Kingdom (Boddington, 2012, pp. 24–25; Green et al., 2015, p. 30; Juengst, 1991, p. 71; Walker & Morrissey, 2012; Wilson, 2004, p. 127).

Genomic Allure in the Muslim World

The three above outlined dimensions of the HGP and the associated genomic revolution forged a compelling connection between the field of genomics and the Muslim world.

The first dimension, in particular, allowed the HGP to cultivate a positive image, widely acclaimed as a monumental and ambitious feat in modern biological research. Right from its inception, the HGP was perceived by many scientists and religious scholars in the Muslim world as the epitome of a scientific revolution that blurred the lines between imagination and reality. In a bid to encourage Muslim-majority countries to participate in this scientific race, the fundamental rationale rested on the strategic significance of not falling behind. There was a prevailing concern that nations lagging in this critical race would risk marginalization and exploitation by more advanced counterparts leading the scientific revolution (Ghaly, 2018, pp. 57–58, 64–66; Khādimī, 2004, pp. 62–63). Beyond the potential of ameliorating the future by combatting prevalent genetic diseases, particularly in Muslim-majority regions like the Gulf region, joining the genomic revolution was also viewed as a strategic step towards reviving the historical golden age of science in Islamic civilization (Ghaly, 2018, pp. 58–59).

The second dimension, emphasizing the imperative to study the genomes of diverse populations for enhanced precision in medicine, positioned the Arab world as an ideal participant in the genomics field. Broadly, this dimension played a pivotal role in the “globalization” of genomic research, evidenced by major funding agencies like the American National Institutes of Health (NIH) and the British Wellcome Trust providing grants to support genomic investigations worldwide, including Africa (Collins, 2011; Green et al., 2015, p. 30). The Arab world held particular allure for human genetics due to the prevalence of some genetic diseases and a high level of genetic diversity shaped by various historical factors, such as the migrations of Semitic tribes from the Arabian Peninsula, the Islamic expansion in the seventh century, the Crusade wars, and contemporary migration dynamics. Consequently, the region emerged as a valuable reservoir for researchers seeking to uncover disease-causing genes and pinpoint causative variants (Teebi & Teebi, 2005; Zayed, 2016). The initiation of the First Arab Genome sequencing project in 2008 exemplified collaborative efforts within an international consortium led by Saudi Biosciences (Oxford Business Group, 2009). Subsequently, a growing body of scientific research originating from the Arab world, often in collaboration with global partners, has contributed to international genomics journals, enhancing the inclusivity and diversity of populations represented in this field (Al-Ali et al., 2018; Fakhro et al., 2016; Mbarek & Ismail, 2022; Saad et al., 2022; Thareja 2021; Zhou et al., 2022).

The third dimension, underscoring the intimate connection between genomics and ethics, holds particular significance for this study. In contrast to the evident scientific enthusiasm for exploring human genomes in the Arab world, the aforementioned Ethical, Legal, and Social Implications (ELSI) initiatives, despite their initiation in the early 1990s, scarcely delved into or exhibited awareness of religious considerations regarding genomic ethics, not to mention Islamic perspectives in particular.Footnote 1 Notably, the absence of religious perspectives on the central theme of this study—namely, the ethical management of incidental findings (IFs)—has been corroborated by existing reviews (Dolan et al., 2022; Elfatih et al., 2021; Ewuoso, 2016; Jackson et al., 2012; Walker & Morrissey 2012). This observation appears to be part of a broader issue within the prevailing secular bioethical discourse in Western academia, where religious discourse, in general, tends to occupy a peripheral or marginal position (Cole-Turner, 1992; Ghaly, 2018a, 2018b, pp. 17–18, 33–34; Guinn 2006).

A striking example in this context was the editorial decision taken by Developing World Bioethics in 2018, where the journal opted to significantly restrict the publication of “exclusively religious contributions.” Citing the challenges of defending religion-based arguments within the analytical framework of “public reason-based discourse” and the perceived inadequacy of religious arguments in making substantive or broadly relevant contributions to bioethics discourse, the editor of the journal communicated to readers that such contributions would henceforth be limited (Schuklenk, 2018). In addition to critical responses to this editorial decision (Duivenbode & Padela, 2019; Wiersma et al., 2019), ongoing discussions keep examining the role, if any, that should be assigned to religious perspectives in modern bioethical discourse (Emmerich, 2019; Evans 2020), where some bioethicists go to the extent of asserting the incompatibility of religion and bioethics. On one hand, they clarify that this incompatibility does not imply that bioethics should exhibit disrespect toward believers of any particular creed or overlook the cultural influence of religion. On the other hand, the argument posits that “bioethics should keep its distance from religion because it loses something important when it presumes in advance that religious views occupy any kind of privileged status when it comes to theorizing decisions about health, health care, and biomedical innovation” (Murphy, 2012, p. 3). The contention is that “either bioethics does its work on the assumption of an independently discernible morality or it must attempt to discern relevant divine fiats, which are—so far as human beings can tell—entirely idiosyncratic” (Murphy, 2012, p. 6).Footnote 2

Understudied Topic

Islamic reflections on genomic ethics trace their origins to the early 1990s, with initial discussions centering around the implications of the Human Genome Project (HGP), which was still in progress at the time. In addition to writings by individual Muslim religious scholars and biomedical scientists, these discussions assumed an interdisciplinary nature through translational Islamic institutions employing the mechanism of collective religio-ethical reasoning (ijtihād). The Kuwait-based Islamic Organization for Medical Sciences (IOMS) played a pivotal role in this regard by engaging both Muslim religious scholars and biomedical scientists in symposia addressing various facets of genetic and genomic ethics.Footnote 3

Despite these intensive deliberations spanning over two decades, the ethical questions triggered by the IFs hardly received attention. This can be attributed, in part, to the fact that the foundational and seminal discussions took place during the 1990s. At this time, Muslim religious scholars, and most ethicists worldwide, were primarily focused on addressing what can be termed the “early questions” of genomics, as outlined in the introductory chapter of this study. Ethical implications of IFs were not yet prominent on the global bioethics agenda for genomics.Footnote 4 Post-1990s deliberations in the Muslim world seem to have concentrated on refining and adjusting earlier discussions, rather than responding to new developments and pertinent ethical inquiries in the field.

Available literature, however, shows that geneticists in the Muslim world, along with biomedical scientists in general, have been recognizing ethical challenges arising from IFs since 2015 and have underscored the need to address them.

In an article published in 2015, a number of biomedical scientists based in Qatar demonstrated an awareness of the necessity to tackle these ethical questions within the framework of Muslim-majority countries (Shanti et al., 2015). However, the article did not delve into how this issue could be further fathomed out from an Islamic perspective. Another instance is the Saudi-based epidemiologist Omar Kasule, who briefly addressed this issue in a presentation at the First Annual Saudi Society of Medical Genetics Conference held at King Abdulaziz City for Science and Technology on April 30, 2015. In the presentation's bullet-point outline, which is available on Kasule’s website, he argued that genetic researchers “must avoid the complications of IFs by not actively seeking or even noticing them.” He also emphasized the importance of proactively addressing any potential ethical dilemmas arising from IFs through the informed consent process in advance (Kasule, 2015). Because of the bullet-point format of the published presentation, no further details were provided.

Another example that is worth mentioning here is the 2016 report on genomics in the Gulf region published by the Qatar-based World Innovative Summit for Health (WISH). The interdisciplinary pool of contributing authors to the report included specialists in genetics, genomics, biomedical sciences, healthcare policymaking, as well as Islamic studies. A distinct section of the report was dedicated to examining the ethical management of IFs from an Islamic perspective (Ghaly et al., 2016a, pp. 35–42). Although that section and the entire report was mainly tailored for an audience with an interest in healthcare policy, this study benefited from the relevant information outlined in that section.Footnote 5 As for Arabic publications, there are quite few sources available, such as the book chapter written by Dr. Ayman Ṣāliḥ, a professor at Qatar University (Ṣāliḥ, 2020, pp. 252–282), and the article of the late scholar Muḥammad Naʿīm Yāsīn (d. 2023) (Yāsīn, 2019), whose perspectives will be analyzed in detail in this study.

Bridging the Gaps

This study aims to address substantial voids in existing scholarship within the two domains of mainstream secular bioethics and Islamic bioethics. Given the required brevity of publications in this series, this study concentrates on a specific but pivotal theme within the expansive area of genomics—that is, the ethical governance of Incidental Findings (IFs) from an Islamic perspective. In doing so, it endeavors to provide a nuanced exploration of ethical considerations surrounding IFs, contributing to the broader discourse on genomics and bioethics.

On one hand, the analyses presented in this study serve to create new avenues for interaction between mainstream and predominantly secular bioethical discourses in Western academia and bioethical discussions originating from religious traditions. Islamic values, constituting an integral aspect of the moral framework for millions of Muslims globally, offer a lens through which they seek to comprehend and make sense of their lives.

Authors of prior studies in Islamic bioethics have debunked certain misconceptions, such as the erroneous assumption that science and technology are value-free, devoid of cultural influence, and consequently “‘immune” to cultural considerations. They have also highlighted the fallacy of the belief that moral solutions derived from the Western secular context universally apply across diverse cultures. This body of literature emphasizes the need for an increased focus on Islamic solutions within predominantly religiously sensitive populations. It underscores the importance for healthcare institutions and professionals to accord greater consideration to individuals’ and societies’ moral and religious sensibilities (Al-Bar & Chamsi-Pasha, 2015, pp. 13–14; Inhorn, 2006; Sachedina 2009, p. 9).

Moreover, these religious values permeate public morality in many Muslim-majority countries, influencing not only mainstream scholarly and intellectual discourse but also the legal and regulatory aspects of numerous bioethical issues. Studies demonstrate the interest of legal specialists in engaging with religious discourse on various bioethical matters, including reproductive genetics (Sharaf al-Dīn, 2001).

Drawing on first-hand experience and more than a decade-long involvement in the healthcare sector in the Muslim world, it is evident that decision-makers in the healthcare sector consistently strive to ensure alignment between to-be-codified laws or to-be-adopted policies and the religious values embraced by society. Ministries of health routinely seek input from Muslim religious scholars and experts in Islamic bioethics to verify the compatibility of existing and future policies and regulations on diverse bioethical issues. As a concrete example of how Islamic ethics contributes to national policymaking in genomics, the full text of the most recent draft of a national policy document on the interplay of Islamic ethics and genomics, written by the author of this study and commissioned by the Qatar Ministry of Public Health, is provided in Appendix B.

On the flip side, this study seeks to make a substantial contribution to the field of Islamic bioethics by addressing existing gaps. Academic publications examining Islamic ethical considerations in genomics are relatively scarce. Moreover, these publications typically concentrate on how Muslim religious scholars and biomedical scientists debated the overarching theoretical question of whether it is religiously permissible for individual scientists and governments of Muslim-majority countries to participate in the genomic revolution. As elucidated in previous studies, this yes/no question dominated Islamic deliberations on genomics from 1993 to 2013 (Ghaly, 2018b).

However, with the initiation of national genome projects and the establishment of biobanks in various Muslim-majority countries, particularly in the Gulf region, since 2013, a myriad of other intricate “how” questions has surfaced. The active involvement of these institutions in the continuously evolving field of genomics has given rise to practical and applied questions, many of which are novel and unprecedented in the field of Islamic ethics. These questions create gaps that necessitate addressing through increased publications in the domain of Islamic bioethics. Through long-term engagement and consultation with institutions dedicated to genomics in the Gulf region, it is evident that the ethical management of Incidental Findings (IFs) takes precedence among their critical concerns. This aligns with the conclusions drawn in recent studies (Elfatih et al., 2021, p. 373; Qoronfleh et al., 2020, p. 13).

While this study aims to contribute to and address gaps in both secular and Islamic bioethical discourses, it does not view these two discourses as inherently competitive, opposing, or mutually exclusive. On the contrary, the intention is to illustrate that both are essential for the development of a truly international discourse. The study does not seek to defend the superiority of one approach over the other but rather promotes constructive and critical engagement between them. Therefore, the target audience extends beyond the Muslim community to encompass the broader scholarly community of bioethicists and geneticists worldwide. The study is particularly relevant to those interested in intercultural communication and the cross-fertilization of ideas and perspectives.

An additional note is also due on some methodological aspects of this study. While the primary focus remains on Islamic bioethics, the study will incorporate references to parallel secular perspectives and insights whenever pertinent. Secular bioethicists occasionally adopt oversimplified stereotypes, assuming that religious bioethical discourse is inherently dogmatic, lacking space for rational reasoning, and consequently unwilling to verify its logical consistency and coherence. Using Islam as an example, this study aims to illustrate that religious bioethical discourse can be grounded in rigorous reasoning, synthesizing scriptural evidence-based systems and rational thinking, each with its verifiable and measurable coherence and logic.

To delve deeper into this aspect, a dedicated chapter will expound on the related theoretical dimensions in a manner accessible to non-specialists in Islamic studies. In acknowledging the diversity of perspectives within the Islamic moral tradition, this study will meticulously examine dissenting positions, the arguments put forth by proponents of each stance, and a wide array of authoritative sources spanning both classical and modern scholarship. This comprehensive approach aims to provide a nuanced and thorough understanding of Islamic bioethics, fostering dialogue and mutual understanding across diverse perspectives.

A final note is warranted regarding the sources cited in this study, all of which are written in Arabic or English, the two languages mastered by the author. To avoid potential misunderstandings regarding the assumption that the use of Arabic sources implies an exclusively “Arab” perspective, it is crucial to provide a general note about the field of Islamic bioethics. As extensively detailed in my previous publications (Ghaly, 2010, 2012, 2015, 2018a, 2018b), the primary contributions shaping this emerging field originate from three transnational Islamic institutions: the Kuwait-based Islamic Organization for Medical Sciences (IOMS), the Jeddah-based International Islamic Fiqh Academy (IIFA), and the Mecca-based Islamic Fiqh Academy (IFA). While the publications of these three institutions, heavily quoted in this study, are predominantly in Arabic, the contributing scholars hail from across the Muslim world, representing a diverse spectrum of Islamic doctrines, including Sunni, Shia, Ibadi, and others. The list of contributing scholars includes renowned figures from various regions, such as ʿAlī al-Taskhīrī and Ḥasan al-Jawharī from Iran in the Persian-speaking part of the Muslim world and Taqi Usmani from Pakistan in the Urdu-speaking world, among others. Given these developments that have blurred the lines between different Muslim-majority countries, it becomes challenging to delineate a distinctively “Arab” versus “Persian” or “Urdu” perspective. Nevertheless, it remains necessary to delve into the works published in the various languages spoken in Muslim-majority countries through academic studies authored by researchers proficient in these languages.

In terms of classical sources, the situation is notably straightforward. Virtually all well-established contemporary Muslim scholars across the globe are proficient in Arabic, routinely drawing upon many of the classical Arabic sources cited in this study. Arabic, given its status as the language of classical Islamic texts, acts as a unifying medium that facilitates scholarly discourse and engagement with traditional Islamic scholarship, underscoring its enduring significance in the realm of Islamic Studies.

Overall Structure of the Study

Given the identified gaps in the existing academic literature and the commitment to delivering in-depth analyses that remain accessible to a broad readership with diverse backgrounds and specializations, the subsequent portion of this study will be organized into two main chapters. Each of these chapters will, in turn, encompass various sections, structured as follows.

Chapter 2, titled “Constructing a Comprehensive Moral Discourse,” delves into the question of devising a robust and well-structured moral framework. This framework is designed to be robust in theory and adaptable in practice, ensuring its reliable application to a diverse array of concrete issues and cases. So, the chapter endeavors to illuminate the process of creating a moral discourse that seamlessly combines theoretical solidity with practical flexibility, facilitating its consistent application across a broad spectrum of ethical dilemmas.

This chapter consists of three sections. The first section, “Theoretical level: Metaethics and normative ethics,” presents a succinct overview of pertinent metaethical discussions within the Islamic tradition, particularly as delineated in the scholarly disciplines of Islamic theology and legal theory. It elucidates the significance of aligning human actions with God’s will so that they can be deemed morally good. Addressing normative ethics, this section delves into the process of religio-ethical reasoning (ijtihād) and how it can be employed to discern God’s will in specific situations, particularly those pertaining to the field of bioethics.

Expanding upon the established metaethical framework, the second section, “Practical level: Fivefold classification of human acts,” delves into the widely acknowledged and centuries-old fivefold scheme for categorizing human actions according to their ethical value. After outlining the details and subtleties of this fivefold classification, known as al-aḥkām al-khamsa, this section further elaborates on how the IFs could be situated within one of these categories.

Chapter 3, titled “Ethical judgment of what (not) to be disclosed,” examines the intricacies of managing incidental findings (IFs). By way of setting the stage, the chapter starts with elucidating the technical term IFs within the context of this study. The chapter unfolds further across four sections, each dedicated to specific examples of IFs aligning with the categories of human actions outlined in the preceding chapter.

The first section, “(A) Obligatory,” undertakes an analysis of two instances of IFs where disclosure is deemed obligatory. This involves forewarning the patient or research participant about the likelihood of encountering IFs during genome sequencing and disclosing life-saving information.

The second section, “(B) Prohibited,” tackles one of the most contentious and ethically challenging categories of IFs—specifically, those revealing “misattributed” paternity. This section delves into the diversity of perspectives within the Islamic tradition. Initially, the standpoint asserting that the disclosure of these IFs is prohibited, is delineated, accompanied by a comprehensive presentation of key arguments supporting this position. Subsequently, an opposing viewpoint, asserting that disclosure is obligatory, is explored. This also involves a thorough exposition and analysis of relevant arguments and counter-arguments.

The third section “(C) Recommended” discusses IFs whose disclosure would help prevent, treat, or improve one’s health condition and explains why their disclosure should be judged as a recommended act. To defend this position, the section analyzes the Islamic perspectives on the concepts of seeking medical treatment (tadāwī) and providing medical care (taṭbīb). Then the so-called “minimum gene list”, developed by the American College of Medical Genetics (ACMG) is examined as a concrete example of these IFs whose disclosure should in principle be encouraged.

The fourth section “(D) Reprehensible” discusses the disclosure of IFs related to possible misattributed distant lineage, particularly tribal filiation. We argue that it is in principle reprehensible to disclose these IFs to the person whose gene/genome has been sequenced. To defend this position, the section elaborates on the concept of distant lineage (nasab baʿīd) in Arab culture and religious normativity and the parallel concept of genetic ancestry.

The final part of this study comprises two appendices and a glossary. Appendix A, titled “Ethical judgments on incidental findings (IFs): A Systematic overview”, provides a highly condensed summary of all analyzed IFs, their corresponding ethical judgments, and supporting key arguments. Appendix B, titled “Islamic Ethics and Genomics: Drafting National Policy” features the author’s draft of a national policy document commissioned by the Qatar Ministry of Public Health (MoPH). This document emphasizes the intricate interplay between genomics and Islamic ethics and is currently under review by the MoPH and various stakeholders in Qatar. The inclusion of this document serves to illustrate the significance of Islamic ethical perspectives in shaping national healthcare policies in a Muslim-majority country like Qatar. Lastly, the glossary is included to enhance the accessibility of the book to a diverse readership, extending beyond specialists in Islamic bioethics to encompass researchers and healthcare professionals from different backgrounds.