New research reveals how genetic screening transforms personal identity and family life across six Arab nations
What Is Geneticization and Why Does It Matter?
Geneticization refers to the growing tendency to explain health, behavior, and identity primarily through genetic terms, often at the expense of social, environmental, and cultural factors . The concept, introduced by Canadian epidemiologist Abby Lippman in the 1990s, has evolved into a framework for understanding how genetic technologies reshape human experience .
In the GCC region—comprising Bahrain, Kuwait, Oman, Qatar, Saudi Arabia, and the United Arab Emirates—this geneticization process unfolds against a backdrop of unique cultural, religious, and demographic characteristics. The region’s oil-driven wealth has enabled massive investment in advanced healthcare technologies, while high rates of consanguineous marriage create elevated risks for recessive genetic disorders .
The Gulf Context: Wealth, Consanguinity, and Religion
The GCC countries represent a fascinating case study for genetic technology adoption. These nations transformed from desert landscapes into wealthy urban centers, yet maintain deep-rooted cultural traditions that shape how modern medicine is received .
Consanguinity: A Cultural Cornerstone
Consanguineous marriage—marriage between individuals who are second cousins or closer—remains deeply embedded in Gulf culture. Rates exceed 60% in some GCC countries, with first-cousin marriages being the most common . In Saudi Arabia, one study found a consanguinity rate of 64%, with third-degree relatives (first cousins) comprising 69% of these unions . In Qatar, consanguinity rates surpass 50% .
These marriages are culturally encouraged and neither religiously nor legally prohibited. They offer social and economic benefits, including strengthening family ties and simplifying inheritance matters. However, they significantly increase the risk of autosomal recessive genetic disorders, creating a substantial burden on healthcare systems .
The Islamic Dimension
Islam profoundly influences attitudes toward genetic interventions. Key theological concepts include:
- Divine predestination (qadar): The belief that God has decreed all events creates tension with genetic prediction, which some view as “playing God” or attempting to foretell the future (ghayb)
- Sanctity of life: Islamic emphasis on preserving life creates both support for (lifesaving interventions) and resistance to (prenatal testing, abortion) genetic technologies
- Family centrality: Arab culture places family, not the individual, at society’s core, shaping how consent and autonomy are understoodÂ
The Study: Examining ELSI in the GCC
Researchers Safa Shaheen and Mohammed Ghaly conducted an interdisciplinary qualitative study combining systematic document analysis with interpretive normative ethical analysis . Their methodology examined four source categories:
- Peer-reviewed academic literature
- National laws and regulatory documents
- Policy reports and guidelines
- Authoritative Islamic bioethical scholarshipÂ
The analysis focused on how geneticization unfolds specifically in the GCC context, examining ethical, legal, and social implications that differ significantly from Western, secular frameworks.
Key Findings: Ethical Implications
Theological Sensitivities
Religious beliefs play a crucial role in shaping attitudes toward genetic screening in the GCC . Some Muslim religious scholars express skepticism toward genetic screening, perceiving it as an attempt to foretell the future—a capacity attributed only to God .
The inherent uncertainty of genomic results further complicates these concerns. Incomplete penetrance and variable expressivity mean the presence of a pathogenic variant does not guarantee disease manifestation, challenging deterministic interpretations and underscoring Islamic emphases on divine will and moral caution .
However, Kuwaiti religious scholar Ajil al-Nashmi offers a theological framework for engagement, arguing that genetic advancements can only materialize with God’s will. He contends that Muslims should engage with scientific developments and assess applications by weighing benefits and harms through Sharia principles .
Table 1: Ethical Tensions in GCC Genetic Programs
| Ethical Issue | Western Perspective | GCC/Islamic Perspective | Key Tension |
|---|---|---|---|
| Autonomy | Individual rights and self-determination | Family and community decision-making | Individual vs. collective choice |
| Informed Consent | Voluntary, informed individual choice | Relational autonomy with family influence | Personal freedom vs. social obligation |
| Divine Will | Secular, human-centered approach | Divine predestination (qadar) | Human intervention vs. God’s plan |
| Stigmatization | Privacy and nondiscrimination | Family/tribal honor and reputation | Personal privacy vs. community standing |
| Eugenics | Historical abuses, “soft eugenics” concerns | Preventive health and reducing suffering | Preventing harm vs. selecting traits |
Autonomy and Informed Consent
Autonomy is one of the most contested concepts in bioethics within the GCC context . Western traditions emphasize individual rationality, independence, and personal choice, but these individualistic conceptions clash with relational autonomy shaped by family networks, cultural norms, and interpersonal relationships in Gulf societies .
Informed consent faces several challenges:
- Mandatory screening: PMS in five of six GCC countries (all except Oman) makes genetic testing a prerequisite for marriageÂ
- Family influence: Women often discuss research participation with husbands or family members before consentingÂ
- Social pressure: Familial and community expectations significantly influence decisions, potentially compromising individual autonomyÂ
- Dynamic consent: Rapid genomic technologies generate overwhelming information, requiring ongoing consent rather than a one-time eventÂ
The state’s protective role in many Arab countries prioritizes collective welfare over individual liberties. This utilitarian public health approach clashes with autonomy principles, making genetic testing a prerequisite for marriage and effectively restricting freedom of choice .
Genetic Discrimination and Stigmatization
Unlike Western contexts where genetic information may affect employment and insurance access, GCC countries currently present a different picture. Genetic information is not linked with electronic health records, and healthcare is subsidized regardless of insurance status . Employers and insurance companies cannot access genetic test results.
However, cultural sensitivities create distinct concerns. In communities where marriage is highly valued and family or tribal names carry significant social weight, being linked to a hereditary condition can result in serious social repercussions for the entire family or tribe . Many individuals avoid genetic testing, perceiving risks to familial reputation as outweighing potential benefits .
As precision medicine becomes reality and genetic data links with health records, robust anti-discrimination protections will become essential. The UAE has taken leadership through Federal Decree Law No. 49 of 2023, establishing comprehensive regulations for genetic data protection .
Table 2: Premarital Screening Laws Across GCC Countries
| Country | Law/Year | Mandatory For | Conditions Screened | Penalties |
|---|---|---|---|---|
| Bahrain | Law No. 11/2004 | Citizens only | Thalassemia, SCD, G6PD, Rubella; HIV, HBV, HCV, Syphilis | Fine: 500 BHD (~$1,300) |
| Qatar | Law No. 22/2006 Family Law | Citizens & residents | Sickle cell, Thalassemia, Homocystinuria, CF, SMA; HBV, HCV, HIV, Syphilis, measles | No fine specified; no refusal of contract |
| Kuwait | Family Law No. 31/2008 | Citizens only | Thalassemia, SCD; HIV, HBV, HCV, Syphilis | Imprisonment up to 1 year; fine: 1,000 KWD (~$3,200) |
| Saudi Arabia | Royal Decree No. 4/B/54,504 | Citizens only | Thalassemia, SCD; HIV, HBV, HCV | No fine specified; no refusal of contract |
| UAE | Federal Law No. 13/2020, Personal Status Law | Citizens & residents | Beta thalassemia, SCD, hemoglobinopathies; HIV, HBV, HCV, Syphilis | Sharia courts can refuse marriage contracts |
| Oman | No mandatory law | Not mandatory | Optional under “Child Law” | None |
Note: This table shows the legal landscape for premarital screening across the six GCC nations, highlighting significant variation in scope, penalties, and legal basis .
Eugenics Concerns
Eugenics—the practice of advocating for desirable traits to improve future generations—raises concerns in genetic screening programs . In the GCC, PMS primarily screens for hemoglobinopathies, using a preventive approach to reduce genetic conditions. This proactive strategy raises awareness and informs couples of carrier status.
Attitudes toward prenatal diagnosis and therapeutic abortion are influenced by religious beliefs. Increased education has contributed to more openness to pregnancy termination during the permissible period—within 120 days after conception, the point at which “ensoulment” occurs .
Perceptions of disability vary globally, influenced by societal norms and socio-economic factors. While urbanization has helped mitigate stigma associated with disability in some GCC countries like Saudi Arabia, concerns persist about genetic screening potentially reinforcing negative biases against individuals with disabilities .
Return of Incidental Findings
The terms secondary findings and incidental findings (IFs) refer to results unrelated to the primary testing indication . Key ethical questions include:
- Individual burden: Disclosing future disease risk can disrupt daily life and cause psychological distress
- Familial implications: Mutations may become associated with family or tribal names, affecting social status
- Actionable findings: Life-threatening conditions with preventive options (e.g., BRCA 1/2) are generally disclosedÂ
- Non-actionable findings: Conditions without cure (e.g., Huntington’s, Alzheimer’s) create ethical dilemmas
Countries like Saudi Arabia and Kuwait follow American College of Medical Genetics (ACMG) guidelines for disclosing IFs. However, challenging IFs include misattributed paternity, which by law cannot be tested in Kuwait and is generally nondisclosed across the region .
The Qatar Genome Program has begun returning actionable findings to research participants who have consented. From an Islamic perspective, disclosure of life-threatening implications is considered obligatory, while disclosure of misattributed lineage is considered reprehensible because it may generate profound socio-political implications .
Legal Landscape: A Patchwork of Regulations
Premarital Screening Laws
Table 2 above illustrates the variation in PMS legislation across GCC countries. Key differences include:
- Target population: Qatar and UAE require both citizens and residents to undergo screening; Bahrain, Kuwait, and Saudi Arabia mandate only for citizensÂ
- Legal basis: Qatar and Kuwait embed PMS in family law, emphasizing family; Saudi Arabia focuses on marriage through its “Healthy Marriage Program”; UAE emphasizes public healthÂ
- Penalties: Kuwait imposes the harshest penalties (imprisonment and substantial fines); other countries have no specific penaltiesÂ
- Consent process: UAE requires detailed consent forms and provides digital certificates for normal results, with results discussions for abnormal findingsÂ
Genomic Research Regulation
Codified laws for genomic research remain limited, though progress is evident. The UAE’s Federal Decree Law No. 49 of 2023 establishes comprehensive regulation for human genome use, safeguarding privacy, preventing discrimination, and prohibiting unethical exploitation .
Qatar’s Ministry of Public Health has issued policy guidelines for genomic research design and review, providing practical assistance to researchers and Institutional Review Boards . However, significant gaps remain in specifying the age of consent for voluntary genetic testing.
As of now, the GCC countries lack a model for genetic discrimination protection. International frameworks from human rights, insurance, and disability laws can be adapted to regional needs .
Social Implications: Knowledge, Stigma, and Effectiveness
Knowledge and Awareness Gaps
Despite mandatory screening programs, public knowledge remains limited. Studies reveal:
- Qatar University students: Even after a decade of PMS, knowledge remained relatively lowÂ
- Kuwait University students: Positive attitude but struggle to comprehend PMS necessityÂ
- Oman high school students: Favor PMS but lack awareness about specific diseases testedÂ
- Saudi Arabia: Mixed knowledge levels; studies highlight population’s high awareness but insufficient knowledgeÂ
Educational programs prove effective in improving understanding and attitude. Institutions and associations in the UAE have successfully promoted awareness through targeted initiatives .
Stigmatization
Concerns about stigmatization significantly impact participation. If genetic test results become known, individuals or couples identified as carriers may face social ostracization. Family or tribal names continue to hold significant social value, and being linked to a hereditary condition can result in serious social repercussions .
A framework proposed for safeguarding genetic privacy recommends a “need-to-know” basis disclosure of test results, with confidentiality agreements when full disclosure is necessary .
Program Effectiveness
Effectiveness of PMS programs varies:
- Bahrain: Successfully reduced SCD prevalence from 2% to half a decade later, but study of 30 high-risk couples found 17 proceeded with marriage despite counselingÂ
- Kuwait: Convinced over 50% of at-risk couples not to proceed with marriage, with free PGT available for incompatible couplesÂ
- Saudi Arabia: Initial limited success but later reduced at-risk marriages; factors influencing effectiveness include timing, awareness, belief in fate, and inadequate counselingÂ
- UAE: Demonstrated reduction in annual births with thalassemiaÂ
Why This Matters: Implications for Policy and Practice
This research has significant implications for how GCC countries and other Muslim-majority societies navigate genetic technologies:
- Cultural sensitivity: Programs must align with local values and norms, recognizing that imported Western ethical frameworks may not applyÂ
- Religious engagement: Involving religious scholars in policy development is essential, as theological concerns significantly affect acceptanceÂ
- Education: Comprehensive public education is needed to address knowledge gaps and reduce stigmaÂ
- Legal frameworks: Comprehensive genomic legislation must balance innovation with privacy and nondiscrimination protectionsÂ
- Consent processes: Dynamic, culturally responsive informed consent is necessary, respecting family involvement while protecting individual rightsÂ
Conclusion: Towards a Culturally Grounded Bioethics
This study offers a crucial contribution to global ELSI discourse by examining geneticization outside its Western birthplace . The GCC region presents unique challenges at the intersection of rapid technological advancement, Islamic bioethical principles, and deeply embedded socio-cultural norms.
The findings underscore that geneticization is not a uniform process. It is shaped by local context, religious values, and cultural traditions. In the GCC, high rates of consanguinity, family-centered decision-making, and Islamic theological perspectives create distinct ethical tensions that require engagement with Islamic moral frameworks .
As the region continues advancing genomic medicine, the authors recommend:
- Engaging religious leaders and scholars in policy development
- Providing culturally appropriate genetic counseling
- Protecting individual privacy and confidentiality
- Ensuring screening programs are used ethically and responsibly
- Fostering open dialogue about genetics, culture, and religionÂ
By acknowledging the unique socio-cultural and religious landscape of the GCC, this analysis contributes to a more nuanced understanding of the challenges and opportunities presented by genetic technologies. As precision medicine becomes a reality, ongoing dialogue and policy adaptation will be essential to maximize benefits while respecting individual rights, religious values, and cultural traditions .
Reference: Shaheen S and Ghaly M (2026) Geneticization outside genetics’ birthplace: ethical, legal and social implications in the Gulf Cooperation Council region. Front. Genet. 17:1716793. doi: 10.3389/fgene.2026.1716793
