1. Background

Genetic blood disorders are among the non-communicable conditions that pose a growing burden on national health care systems. Sickle cell disease (SCD) and thalassaemia represent the two most prevalent categories of inherited haemoglobin disorders worldwide (Khandaker et al., Reference Khandaker, Ferdouse and Shemu2025). It is estimated that more than 300,000 infants with severe forms of SCD or thalassaemia are born each year, with the majority living in low- and middle-income countries (Odame, Reference Odame2023). Although survival has improved substantially in high-income settings, where nearly all children with SCD now reach adulthood, life expectancy remains approximately 20 years shorter than that of the general population (Kavanagh et al., Reference Kavanagh, Fasipe and Wun2022).

Recent estimates from the Global Burden of Disease Study indicate that the number of children born with SCD globally increased by 13.7%, reaching 515,000, largely driven by population growth in the Caribbean and sub-Saharan Africa (Thomson et al., Reference Thomson, McHugh, Oron, Teply, Lonberg, Tella and Hay2023). Over the same period, the total number of people living with SCD worldwide increased by 41.4%, from 5.46 million in 2000 to 7.74 million in 2021 (Thomson et al., Reference Thomson, McHugh, Oron, Teply, Lonberg, Tella and Hay2023). Beyond sub-Saharan Africa, SCD constitutes a major public health challenge in regions such as the Mediterranean basin and the Middle East, where prevalence rates are considerably higher than those reported in Europe (Bailey et al., Reference Bailey, Wesley, Adeyinka and Pierre2019; Colombatti et al., Reference Colombatti, Hegemann, Medici and Birkegård2023).

The distribution of genetic blood disorders is influenced by both biological and sociocultural factors. In many Arab countries, population characteristics such as large family size, high rates of consanguineous marriage, and tribe- or clan-based endogamy contribute to elevated prevalence of inherited conditions (El-Hazmi et al., Reference El-Hazmi, Al-Hazmi and Warsy2011; Kaptijn, Reference Kaptijn2015). Although SCD is not confined to a specific racial group, it is closely associated with health inequities, reflecting persistent challenges in access to effective treatment, pain management, and resource allocation (Marsh and Treadwell, Reference Marsh and Treadwell2024). Clinically, SCD is characterised by chronic haemolytic anaemia, recurrent vaso-occlusive crises, and multi-organ complications. Until recently, bone marrow transplantation was the only curative option, though advances in gene therapy are ongoing (Abraham and Tisdale, Reference Abraham and Tisdale2021).

Beyond its clinical burden, SCD poses significant social and economic challenges. Health system costs associated with emergency care, hospital admissions, blood transfusions, and long-term pain management place sustained pressure on public health budgets. A systematic review reported high prevalence of depression (21–33%) and anxiety (7–36%) among adults with SCD, alongside reduced health-related quality of life, particularly among patients requiring opioid analgesia (Lee et al., Reference Lee, Vania, Bhor, Revicki, Abogunrin and Sarri2020). Evidence from middle-income countries suggests that acute pain crises account for the majority of emergency visits and hospital admissions, with anaemia-related complications being among the most costly (Lobo et al., Reference Lobo, Moura, Fidlarczyk, Duran, Barbosa, Oliveira and Hankins2022).

Preventive strategies have long been recognised as central to reducing the incidence of inherited blood disorders. Screening interventions – particularly newborn screening (NBS) and premarital screening (PMS) – are widely endorsed as effective public health tools (Piccin et al., Reference Piccin, Murphy, Eakins, Rondinelli, Daves, Vecchiato and Smith2019). While NBS facilitates early diagnosis and improves outcomes, it does not prevent disease occurrence in the current generation (UK National Screening Committee, 2011). By contrast, PMS enables informed reproductive decision-making and has the potential to reduce disease incidence over time (Rahman et al., Reference Rahman, Naznin, Giti, Islam and Khatun2014).

In many Arab countries, first-cousin marriage accounts for 25–30% of all unions (Al-Gazali and Hamamy, Reference Al-Gazali and Hamamy2014; Tadmouri et al., Reference Tadmouri, Nair, Obeid, Al Ali, Al Khaja and Hamamy2009). Cultural norms, religious interpretations, and family expectations influence responses to screening results, and resistance to marriage cancellation following abnormal findings is well documented (Saffi and Howard, Reference Saffi and Howard2015). These dynamics complicate the implementation of preventive policies, even where their public health benefits are well established.

Despite these challenges, several Middle Eastern countries have introduced mandatory PMS as a prerequisite for marriage licensure. Evidence from Turkey, Iran, and Iraqi Kurdistan suggests reductions in β-thalassaemia incidence of up to 90% following compulsory screening (Saffi and Howard, Reference Saffi and Howard2015). Ethical debates regarding autonomy, stigma, and reproductive choice, however, continue to shape public and political discourse.

Kingdon’s Multiple Streams Framework (MSF) offers a useful analytical lens for understanding why some preventive health policies gain political traction while others remain voluntary or delayed (Kingdon, Reference Kingdon1995). Rather than evaluating policy effectiveness, MSF explains how issues enter the decision agenda through the contingent alignment of problem recognition, policy feasibility, and political conditions (Lancaster et al., Reference Lancaster, Ritter and Rhodes2019). Against this background, this study examines the agenda-setting process that led to the adoption of mandatory PMS for SCD in Oman.

2. Sickle cell disease in Oman: from persistent burden to policy action

The Sultanate of Oman is located on the southeastern coast of the Arabian Peninsula and has a historically diverse population shaped by trade links with East Africa, Iran, and South Asia. Several of these regions are malaria-endemic, contributing to higher prevalence of hemoglobinopathies such as SCD (World Health Organisation, 2004; Hamali, Reference Hamali2021).

National data indicate a substantial SCD burden. A cross-sectional survey reported prevalence rates of 5.3% among children and 4.2% among women (Al-Mashaikhi et al., Reference Al-Mashaikhi, Al-Rawas, Wali, Soliman and Khater2022). Estimates suggest that 9–10% of children in Oman are born with hereditary blood disorders, exceeding global averages (Muscat Daily, 2025). Under Omani law, the state assumes responsibility for comprehensive health care provision, including lifelong treatment for SCD, amplifying the fiscal implications of rising prevalence (Al-Riyami and Daar, Reference Al-Riyami, Daar, Kindi, Madhani, Wali, Rawahi and Zadjali2020).

Consanguineous marriage remains common, accounting for approximately 58% of all marriages, with first-cousin unions comprising nearly three-quarters of these cases (Islam, Reference Mazharul Islam2017). Although PMS was introduced in 2001, uptake remained limited for many years. Earlier studies documented reluctance toward testing and limited behavioural change following abnormal results (Al-Farsi et al., Reference Al-Farsi, Al-Kindi, Al-Shabibi and Al-Zadjali2014; Al Zeedi and Al Abri, Reference Al Zeedi and Al Abri2021).

More recent evidence suggests a generational shift. Surveys among secondary school and university students indicate growing support for mandatory PMS, reflecting changing social attitudes toward genetic risk and prevention (Al-Kindi et al., Reference Al-Kindi, Al-Balushi and Al-Kalbani2019; Alkalbani et al., Reference Alkalbani, Al-Zadjali and Al-Riyami2022). Yet, despite longstanding recognition of PMS effectiveness, Oman only legislated mandatory screening in the mid-2020s, with implementation scheduled for 2026. This temporal gap raises a central agenda-setting question: why did this policy emerge now?

Figure 1.

Pathway to policy adoption based on Kingdon’s multiple streams framework.

Figure 1 illustrates the agenda-setting process that led to the adoption of mandatory premarital screening for sickle cell disease in Oman. The problem stream reflects the gradual reframing of SCD from a normalised medical condition to a national public health and socioeconomic concern, informed by epidemiological indicators and rising system-level costs. The policy stream depicts the evolution of premarital screening from a voluntary service to a mandatory, yet ethically constrained policy solution aligned with existing healthcare infrastructure. The politics stream captures shifts in national mood, institutional attention, civil society advocacy, and political signalling, including national awareness campaigns. The convergence of these streams, facilitated by policy entrepreneurs within the health sector, opened a policy window that enabled the transition from agenda recognition to formal policy adoption.

3. Kingdon’s multiple streams framework and analytical approach

Kingdon’s MSF conceptualises agenda-setting as the interaction of three largely independent streams: problems, policies, and politics (Kingdon, Reference Kingdon1995; Zahariadis, Reference Zahariadis2014). Policy change occurs when these streams are coupled, typically through the actions of policy entrepreneurs who exploit windows of opportunity.

This study adopts MSF as an explanatory framework to analyse how mandatory PMS entered Oman’s decision agenda. The analysis does not assess whether PMS ‘should’ have been adopted; rather, it explains why decision-makers chose to act at this specific juncture.

4. The problem stream: from normalised condition to policy-relevant problem

Within MSF, conditions become problems when they are framed as requiring government intervention (Kingdon and Stano, 1984). In Oman, SCD persisted for decades as a recognized medical condition without generating sustained policy urgency. High rates of consanguinity were socially normalized, and SCD was largely treated as a private familial issue rather than a collective policy concern (Al-Balushi and Al-Hinai, Reference Al-Balushi and Al-Hinai2018).

This lack of urgency reflects what Kingdon describes as ‘background conditions’: problems that are acknowledged but do not command political attention because they align with prevailing social norms and impose diffuse, long-term costs rather than acute crises. For many years, the absence of a single focusing event allowed SCD to remain outside the core policy agenda.

Over time, however, the accumulation of epidemiological indicators, high carrier rates, repeated hospital admissions, and growing treatment costs, challenged this framing. The 2020 cross-sectional survey, widely cited in national discussions, provided a concrete indicator that reinforced perceptions of an unsustainable burden (Al-Mashaikhi et al., Reference Al-Mashaikhi, Al-Rawas, Wali, Soliman and Khater2022)). In a system providing universal free care, these indicators increasingly translated into fiscal and administrative concerns.

Importantly, SCD also became linked to broader socioeconomic narratives, particularly youth employment and productivity. Evidence suggesting reduced labour market participation among affected individuals resonated with Oman Vision 2040, reframing SCD as a development issue rather than solely a health concern (Harris et al., Reference Harris, Preiss, Varughese, Bauer, Calhoun, Treadwell and King2023).

Thus, the problem stream evolved not through crisis but through cumulative reframing that rendered inaction increasingly difficult to justify.

5. The policy stream: why mandatory PMS became viable

In the policy stream, ideas circulate and are refined according to criteria of technical feasibility, value acceptability, and administrative fit (Kingdon, Reference Kingdon1995). Oman’s early reliance on voluntary PMS represented an initial policy response. However, this approach failed to achieve meaningful behavioral change, as evidenced by continued high-risk marriages and inconsistent uptake (Al Zeedi and Al Abri, 2021).

Mandatory PMS emerged as a policy alternative precisely because it addressed the limitations of earlier proposals without requiring radical institutional change. It leveraged existing laboratory capacity, counselling services, and marriage registration processes, minimising implementation costs.

Crucially, the policy was framed as informational rather than prohibitive. Couples retained the right to marry, thereby aligning the proposal with cultural and religious norms while preserving autonomy. This ethical design enhanced the policy’s survivability within the policy stream, distinguishing it from earlier proposals that were perceived as socially intrusive or politically infeasible.

6. The politics stream: signals of a receptive environment

The politics stream captures a shift in national mood, organised interests, and institutional priorities (Zahariadis, Reference Zahariadis2014). In Oman, survey data indicated increasing public support for regulatory action on PMS among younger cohorts (Al-Kindi et al., Reference Al-Kindi, Al-Balushi and Al-Kalbani2019).

Concrete political signals reinforced this shift. In 2025, the Ministry of Health launched a national premarital screening campaign, accompanied by media coverage framing SCD prevention as a national responsibility. Parliamentary discussions increasingly referenced hereditary diseases within broader debates on healthcare sustainability and human capital development.

Civil society organisations, notably the Oman Hereditary Blood Disorder Association, contributed by sustaining public attention and legitimising government intervention through advocacy and patient support. Together, these signals suggested a political environment receptive to action, even in the absence of overt electoral pressure.

7. Stream coupling, policy entrepreneurs, and the policy window

Policy change occurred when actors successfully coupled developments across the three streams. Senior officials within the Ministry of Health, supported by clinician-researchers, functioned as policy entrepreneurs by translating epidemiological evidence into administratively feasible proposals and aligning them with national priorities.

Dr. Salam Al Kindi, a senior haematology consultant and later director of the National Haematology and Bone Marrow Transplant Centre, articulated this logic in a 2010 discussion with His Majesty Sultan Qaboos, stating:

‘What we are promoting is legislation requiring individuals to present a genetic screening certificate when they marry. However, it is challenging to tell people not to marry’. He further proposed issuing genetic screening certificates at a defined age, a concept that later informed policy design. Such these entrepreneurs capitalised on a policy window created by problem reframing, solution readiness, and favourable political timing. Mandatory PMS was formally adopted, with implementation scheduled for 2026.