National Biobanking in Qatar and Israel: Tracing how Global Scientific Institutions Mediate Local Ethnic Identities

Abstract

Biobanks are a growing phenomenon in global biomedicine, as they are key tools of precision medicine initiatives. National biobanks, however, collect data and biological material from populations in specific regions, and the knowledge that national biobanks yield can impact understandings of identity, origins and belonging. Drawing on ethnographic work and documentary analysis examining the Israeli and Qatari national biobanks, I find that these two Middle Eastern biobanks aim to contribute to global biobanking trends, while at the same time, they reinforce local ethnic and national identities. The Israeli biobank reflects pre-existing ethnic identities in Israeli society, while the Qatari biobank predominantly emphasises the emergent national character of the Qatari population. Neither of the biobanks assert a high genetic homogeneity of the national population; rather, they both emphasise a genetically diverse national cohort that is a valuable resource for biomedical research. Through a comparative analysis of global biobanking and ethnic identities, this article demonstrates that biobanks are a rich site for tracking emergent national identities in the Middle East region.

Keywords

Biobanking genome projects Israel Middle East Qatar

Introduction

In 2012, the UK Prime Minister David Cameron launched a £300 million initiative to sequence 100,000 genomes from the UK National Health Service (NHS) patients with rare disorders, cancer and infectious diseases (Marx, 2015). Similarly, in 2015, the US President Barack Obama announced a $215 million effort to couple patients’ physiological and genetic data to improve the ‘precision’ of individual treatment (Reardon, 2015; White House, 2015). The Chinese government followed in 2016 launching the ‘China Precision Medicine Initiative’, a $9.2 billion plan to establish the country as a global leader in precision medicine (Perez, 2017), and recently in Singapore, GenomeAsia100K launched an effort to sequence the complete genome of 100,000 Asians.¹ Since the 1990s, when DNA sequencing yielded the possibility of representing the genetic data of large numbers of people, biobanks have emerged as a key tool in collecting genetic samples of large populations. And with the recent development of fast, the so-called ‘second-generation’, genomic sequencing techniques, there is now much promise of revealing how many diseases are associated with genetic variants.

The ultimate goal of these large-scale genetic database projects is to bridge individual molecular-genetic readings with clinical diagnostics. The knowledge that biobanks can afford is thought to reveal how diverse genetic makeups of populations relate to individuals’ varying treatment responses. Massive databases will likely be established, collating family genealogies, disease histories, drug sensitivities and genomic data, in an integrated system. By identifying the molecular basis for diseases, it is imagined that a new regime of prevention and treatment, the so-called ‘precision medicine’, will emerge. One of the rationales underpinning precision medicine is that genome-wide association studies that use data from thousands of individuals will identify clear-cut disease biomarkers.

Such a regime of precision medicine would generate ‘Big Value’ for the biomedical industry (Cool, 2015, p. 2) by collecting human samples, providing the genetic data for such analyses and investing economic value in such data sets. Indeed, Lassiter et al. (2016) reported Research and Markets’ (2011) valuation that the global market value of biorepositories would be $23.9 billion in 2015. We are thus seeing the development of genetics into a large-scale operation with massive scaling up of the amount of data and the rate at which it can be analysed.

But biobanks often collect data from specific regions and typically aim to recruit participants representative of the population of that specific region (Chadwick & Berg, 2001). In distinction to family-based genetic disease registers, or centralised medical records of the past, national biobanks catalogue participants that are representative of the population as a national cohort (Chadwick & Berg, 2001). Iceland, Estonia and the UK were the first nations to begin national biobanking projects in the 1990s and early 2000s, but with advances in the speed of genomic sequencing, biobanking has spread worldwide. Genetic databasing, biobanking and related projects are underway in Australia, Ireland, Japan, Canada, Singapore, Kuwait, Saudi Arabia, Thailand, Belgium, Luxembourg, Scotland, Norway and South Korea. The national biobank is a key site for studying the relationships between the imagination of a national community, descriptions of natural peoplehood and a putatively delocalised ‘global science’, such as precision medicine. Through the biomedical developments and future therapies they promise, national biobanks (Kaye, 2004) connect the imagination of local national communities with global scientific communities (Busby & Martin, 2006). But each nation’s biobank embodies unique goals, governance and assumptions about the definition of the national population. For example, biobanks may be established as diseased-based repositories of samples or as repositories of healthy national cohorts. Accordingly, Busby and Martin (2006) claim that ‘[e]ach biobank has markedly different aims, operational arrangements and regulatory regimes’ (p. 238) and are sites where varying ‘ideas of national interest, identity and heritage are being constructed (p. 241). Moreover, the knowledge that each biobank produces may impact populations’ self-understanding and ethical and moral relationships to their community (p. 246). This, in turn, can bolster the idea of being part of lived and ‘imagined’ ethnic or national communities (Anderson, 1983).

Despite the capacity to instil imaginations of coherence that complement state-building, biobanking may also be divisive. Hinterberger (2012, p. 528), for example, writes ‘in one of Canada’s first large-scale biobanks, French Canadians, who are understood as a genetically close or homogenous population, are contrasted with what are referred to as “immigrants” and “Québecers from various ethnic and racial backgrounds”’. National biomedical institutions may thus become part of ‘genome nationalism’ (Hinterberger, 2012, p. 542). Similarly, the Mexican Genome Project claimed Mexican genomes belong under national sovereignty, tying national identity and civic participation to the aims of genomic biobanking and progressive medical advancement (Benjamin, 2009; Schwartz-Marín & Cruz-Santiago, 2016; Schwartz-Marín & Restrepo, 2013; Schwartz-Marín & Silva-Zolezzi, 2010). Biological samples, especially DNA, can become a medium through which citizens are encoded as unique individuals while simultaneously constructing or dismantling widely valued imaginations of collectivity. Through negotiations of genetic sameness and difference, biobanks yield a collective identity with presumed shared characteristics or historical origins.

There is a significant literature in social studies of science focusing on biobanks. Much of this has focused on the ethics of sampling and storage of biological material and medical information (Cambon-Thomsen, 2004; Cambon-Thomsen et al., 2007; Haga & Beskov, 2008; Hansson, 2009; McGonigle & Shomron, 2016), the problems and limitations of collective and individual consent (Caulfield & Kaye, 2009; Hansson et al., 2006), the protection of personal data and the legal definition of the nature of the individual participant (Gurwitz, 2015; McGonigle, 2016). Other work has revealed how transnational collaborations challenge governance, where different regulatory and ethical regimes face the challenges of cross-border harmonisation (Chen, 2013; Gottweis & Lauss, 2012; Gottweis & Petersen, 2008; Kaye, 2011). But biobanks and identity-based genetic research raise significant, broad-range concerns. Today, social identities (including national, racial or ethnic identities) are progressively attended to in the molecular realm, a phenomenon the author has discussed elsewhere as the ‘molecularisation of identity’ (McGonigle & Benjamin, 2016). It is this issue of social identities configured through molecular technologies that this article focuses on: specifically, the representation of ethnic and national identities in national biobanking projects. In this article, I examine national biobanks in Israel and Qatar to show how global biobanking trends get localised in specific contexts with consequence for the categorisation of ethnic and national identities. The key empirical question of this article is: How are local ethnic and national identities asserted or challenged through the globally oriented biomedical developments of national biobanks?

Studying biobanks can also contribute to the social theory of science and technology. Here, scholars have typically focused on the ways scientific knowledge is influenced by the historical, social, cultural and political context (Daston, 2000; Jasanoff, 2004), and how science varies across different nation-states (Cooper, 2008; Jasanoff, 2005; Latour, 2004). Regarding the relationship between scientific knowledge and political power, Jasanoff and colleagues (2004, p. i) developed the idiom of ‘co-production’ to emphasise how ‘scientific knowledge both embeds and is embedded in social identities, institutions, representations and discourses’. As a way of reading science entrenched in society, co-production assumes that ‘the ways in which we know and represent the world (both nature and society) are inseparable from the ways in which we choose to live in it’ (Jasanoff, 2004, p. 2). Co-production thus emphasises how science does political work through national biobanks, and consequently, through the biomedical research on specific populations that they render possible. In a co-productionist reading, science is always embedded ‘in social practices, identities, norms, conventions, discourses, instruments and institutions’ (Jasanoff, 2004, p. 3).

Bringing co-production to bear on genetic research, Mozersky and Joseph (2010) compared BRCA genetics across the USA and the UK, finding that ‘specific cultural and biological practices … produce and define populations in local contexts’ (p. 415). While in the USA, BRCA genetics was co-produced with ‘medically underserved populations’, in the UK, BRCA genetics was co-produced with an ‘over-researched Ashkenazi Jewish population’ (Mozersky & Joseph, 2010, p. 415). A co-productionist reading of national biobanks would not ask whether ethnic or national groups are real, imagined or constructed. Instead, it is concerned with the conditions of the genomic and biobanking practices that render mediations of genetic collectivity important and meaningful in the political present. Put differently, why does authenticating the nation within the realm of the molecular sciences hold rhetorical power? Herein I examine two national biobanks, in Israel and Qatar, describing the role of state-backed scientific development and national identity in affecting how ethnicity is represented in the collections of national biobanks. While both Israeli and Qatari biobanks make claims to having exceptional genetic populations, these assertions are not grounded in genetic homogeneity (i.e., a clear-cut biological nation), nor founded on ideologies of racial purity. Instead, these biobanks describe the complex genetic diversity that characterises their respective populations. It is this high degree of genetic diversity that makes the biobanks valuable resources for global precision medicine efforts.

Theoretically, this line of inquiry contributes to the understanding of the relationships between scientific objects and their context of emergence. Substantively, it contributes to the relatively understudied topic of national science and biobanking in the contemporary Middle East. Israel and Qatar were chosen for their comparative potential. They are both small ethno-nations: The State of Israel is Jewish in character, and in Qatar, national belonging depends on descent from a recognised lineage. They are also both technologically advanced states with relatively stable governments compared to other Middle East states. The purpose of this specific comparison is also to examine the varying extent to which national biobanks may be coupled to, and directed by, state authority. I also show that both the Israeli and the Qatari national biobanks are part of a widespread biobanking trend, imagined as participation in a networked ‘global science’ moving towards precision medicine. This article reveals how national biobanks bolster ethnic identities, and how biobanks afford a way to perform ‘biological citizenship’ (Petryna, 2013), that is, to participate in the national collective at the level of biological substance.

Note on Methodology

This article is part of a larger project on genetics and national identity in Israel and Qatar that derives from a participant-based ethnography of the National Laboratory for the Genetics of Israeli Populations (NLGIP), combined with two research trips to Qatar. I participated in a genetics laboratory affiliated with the NLGIP in the Sackler School of Medicine at Tel Aviv University for nine months as a visiting scientist and ethnographer, observing daily practice and research meetings, with particular attentiveness to how laboratory research relates to the cataloguing of ethnic identities. This was supplemented with several unstructured interviews and meetings with the custodians of the NLGIP. Research in Qatar was completed by two research trips, and attendance at the 2015 and 2016 Sidra Biomedical Research Center’s annual ‘Functional Genomics Conference’, combined with documentary analysis, interviews, and visits to Sidra Biomedical Research Center and the Qatar National Biobank. This article draws predominantly on published documents and reports from the NLGIP, Sidra Biomedical Research Center in Doha, the Qatar Biobank (QB) and the Qatar Genome project.

The National Laboratory for the Genetics of Israeli Populations

Jewish immigration to Israel increased following the establishment of the state in 1948, and people arrived from Georgia, India, Iraq, Iran, Turkey, Yemen, Algeria, Libya, Morocco, Tunisia and Ethiopia. While other countries such as India, China, Brazil and the United States also have a mix of populations from diverse ethnic backgrounds (Gurwitz et al., 2003, p. 3), Israel is perhaps particularly unique. The biobank founders claimed there are many different immigrant populations in a very small geographical area, and that the Jewish population, due to prohibitions against intermarriage over hundreds of years, is characterised by a low rate of admixture. This supposedly makes Israel a unique genetic ‘living laboratory’ (Gurwitz et al., 2003, p. 4).

The NLGIP, the Israeli National Biobank, was established in 1994 ‘in light of the awareness to the subject of genetic diversity … under the influence of the Human Genome Diversity Project’ (Gurwitz et al., 2003, p. 5). The laboratory was initially funded by the Israel Council for Higher Education and was established under the auspices of the Israeli Academy of Sciences and Humanities. This is the reason it is called the ‘National Laboratory’ because the initial sponsor was a national scientific organisation. It was not founded as a nationalist project with an exclusive Jewish focus, nor is it authorised directly by the State of Israel. The laboratory was envisioned as a ‘national repository for human cell lines and DNA samples representing the large variation of Israeli and several Middle Eastern populations’ (Gurwitz et al., 2003, p. 5). Today, the laboratory has over 2,000 immortalised human lymphoblastoid cell lines, representing individuals and families of 20 ethnic backgrounds (see Table 1).

Table 1

Catalogue of DNA Samples and Cells of the Israeli National Biobank

Ethnic group	Number of unrelated donors
Jewish
• Ashkenazi (Central European ancestry)	466
• Ethiopian	72
• Georgian	24
• Iranian	76
• Iraqi	103
• Kuchin (India)	85
• Libyan	89
• Moroccan	150
• Sephardi (Turkey & Bulgaria)	166
• Tunisian	29
• Yemenite	159
Bedouin	58
Druze	79
Palestinian	117

Source: National Laboratory for the Genetics of Israeli Populations (n.d.-a).

Israel is a country of approximately 8 million people, with relatively high fertility and with a relatively equal balance of men and women, and across age groups (see Figure 1). The Jewish population of Israel stands at about 6.3 million (75%), with the Arab population about 1,746,000 (21%). There are also about 366,000 (4.4%) people who are either non-Arab Christians or listed as ‘no religion’ in the civil registry.

Figure 1

Source: Central Intelligence Agency (2015a).

The ethnic identities listed in the biobank were self-defined by donors themselves. This practice accords with NLGIP policy that explicitly states that researchers must respect the humanity and cultural integrity of sampled populations. This also means that informed consent must always be obtained from donors or their parent/guardian and that confidentiality must be protected. Furthermore, researchers using the biobank should seek ways participation can benefit the sampled individuals and their communities (National Laboratory for the Genetics of Israeli Populations, n.d.-a). By conjoining respect for humanity, volunteers’ anonymity and ethnic identity, the biobank’s policy aims to serve the greater good and return benefits to donors. The NLGIP does not correlate medical histories of donors with genetic profiles of samples to better understand the populations’ genetics and the relationship between genetics and disease. It is a repository of healthy samples that can facilitate the study of genetic diversity. Moreover, rigorous medical data are not available for the samples. Rather, the consent forms record age, height and weight (to calculate body mass index), smoking habits, and volunteered named chronic conditions and a brief family history. The benefits accorded to participants are the understanding that they are contributing to science and medicine and that in the long run they could benefit from knowledge gained.² However, donors are not afforded an immediate benefit, nor do they gain access to data. The biobank accepts requests by researchers for samples, which are delivered for a modest fee³ and this revenue helps cover the cost of maintaining the biobank. The NLGIP acknowledges that the establishment of the biobank raises ethical issues about participation and remuneration but reports the institutional review board prohibited any reimbursement for blood sample donations and demanded that they must be donated on a voluntary basis (Gurwitz et al., 2003, p. 7). To increase the number of voluntary, unpaid, donors, the NLGIP targeted individuals already undergoing routine blood tests, since they might be willing to donate an additional blood tube (Gurwitz et al., 2003, p. 7). This led to blood samples being collected routinely at community clinics across Israel. Druze samples, for example, were obtained from the Carmel region of Israel, while Bedouin Arabs’ samples were obtained from the Negev region, in the South of the country (Gurwitz et al., 2003, p. 9).

The NLGIP is a member of the EuroBioBank,⁴ a network of biobanks worldwide that provides DNA, and cell and tissue samples for research on rare diseases. The EuroBioBank Network currently has 25 members, with 21 biobanks in 9 European countries (France, Germany, Hungary, Italy, Malta, Slovenia, Spain, United Kingdom and Turkey), as well as those in Israel and Canada. The NLGIP is also affiliated with the USA National Institute of Health Pharmacogenetics Research Network (PharmGKB), the European Biobanking and Biomolecular Resources Research Infrastructure (BBMRI), and has contributed to the CEPH Human Genome Diversity Cell Line Panel as well as to the USA-based Coriell Cell Repositories. To facilitate collaboration with these global bodies, the NLGIP has made coded samples, stripped of any identifying information, available to researchers around the world. All order requests thus far have been for unrelated individuals from specified Israeli ethnic groups (Gurwitz et al., 2003, p. 9). This denotes a lack of research interest in ethnic-specific groups but rather speaks to

the more intensive interest of the ordering researchers in human genome variation studies, such as allelic distribution of polymorphic genes across various ethnicities, as well as looking at mutation frequencies and looking for new mutations, rather than more elaborate human genome research, such as haplotype distribution analysis. (Gurwitz et al., 2003, p. 9)

The predominant interest in the biobank is not in ethnic genetics, ethnic origins or ethnic-specific diseases per se. Rather, it is the diversity of variation across individuals within ethnic groups that interested researchers. The most frequently ordered samples are DNA for Ashkenazi (European) Jews (~40% of all requests). This suggests that the biobank is relatively underutilised as a repository of Middle Eastern populations, even though approximately one-third of the NLGIP samples come from donors within Middle Eastern populations.

Many scientific studies have emerged as a result of samples from the NLGIP. A Google Scholar search for ‘NLGIP’ revealed (as of November 2018) that 275 academic publications have referenced the biobank since its inception in 1994. Perhaps the most noteworthy among these is Michael Hammer’s study of haplotypes (genetic markers) constructed from Y chromosomes to trace the paternal origins of 1,371 males from both Jewish and non-Jewish ethnic groups in similar geographic locations (Gurwitz et al., 2003, p. 12). The study investigated whether Jewish Y chromosome diversity revealed a common Middle Eastern source population, or whether Jewish Y chromosomes reflect mixture with neighbouring non-Jewish populations (Hammer et al., 2000). It concluded that despite their long-term displacements and movements in different countries, despite isolation from other Jewish groups, ‘most Jewish populations were not significantly different from one another at the Y chromosome genetic level’ (Hammer et al., 2000). Such studies are exemplary of the ability of genetic analysis to inform Jewish history and migrations and the relationships between Jews and their host populations over history.⁵ Another major contribution of the NLGIP was to the Human Genome Diversity Project (HGDP; Gurwitz et al., 2003, p. 14).

Although the biobank is housed at the Sackler School of Medicine, current research on the genetic basis of disease at the school does not primarily draw on the biobank’s resources. In fact, contemporary studies in medical genetics are now typically based on computational analysis of online databases. Since it costs a lot to sequence and annotates the full genome of each donor, and since the NGLIP does not have medical records to couple to the samples, genetic researchers now preferentially choose to download data available from genomic databases and analyse the relationship between disease and genetics using computational analysis. However, as sequencing technologies get cheaper, making it easier and faster to sequence individual research subjects and patients, the biobank plans to move to a new phase and begin working more on personalised medicine projects.

In conclusion, the NLGIP is not a nationalist project in the sense that it strives to emphasise biological relatedness between Jews or their connection to territory. The explicit motivations and goals of the biobank were to be part of a global trend in cataloguing human genetic diversity. The biobanking project is humanistic, resting on an imagination of human betterment through biomedical research. Once samples are sent to interested researchers, however, the NLGIP has no control of the results, nor the way they are used for a particular political project, for example rooting the existence of the Jewish nation in genetics. The potentialities that the biobank affords are therefore not inseparable from the outcomes that emerge, and the NLGIP cannot control the outcomes that emerge, nor foreclose the possibility of future eugenic or nationalistic science. In other words, the relationship between the biobank and the research outputs it enables are relatively uncoupled, even while the biobank reinscribes widely held ethnic identities in the way samples are encoded. The current aspirations of the NLGIP and its environs (i.e., the labs that use the samples for research) are in relation to the growing field of precision medicine and the development of targeted genetic treatments for disease. Indeed, technical progress and the global turn towards precision medicine dominate the imaginations, aspirations and values of the laboratory’s research activities. In light of these findings and the absence of the pursuit of the nation as a biological entity in the Israeli National Biobank, I move now to consider comparatively Qatar’s National Biobank.

Qatar Biobank

In just a few decades, the Gulf state of Qatar has changed from an economically devastated and under-populated desert territory to the world’s richest nation (per capita). As citizens of the world’s largest exporter of liquefied natural gas, Qataris now live in a more stable economy than other oil-dependent, the so-called rentier states, due to the relative stability of gas prices. These changes in Qatari society have seen a rise in obesity and diabetes.⁶ The risk of malnutrition and exhaustion has been replaced with the so-called lifestyle diseases. This puts pressure on the state to invest in medical research and healthcare to keep the population healthy and to project an image of progress and modernity.

In 1971, Qatar became an independent state, since which it has been controlled by a single family, Al-Thani family.⁷ Britain facilitated Al-Thani’s central position of power in the Emirate, establishing a monarchical dynasty (Fromherz, 2012, p. 53). Despite the historical tribal-family nature of the state, a national identity is nonetheless emerging. The establishment of a national identity has involved the resurrection of past-shared experience, typical of modern nationalisms. One particular event has been grasped for collective identity formation: a past battle against a foreign Ottoman force. In 1892, 200 Ottoman soldiers arrived in Qatar to stake a claim to the territory, and after a refusal by Sheikh Jassim (Al-Thani) to meet, these soldiers captured 13 Qatari chiefs. Sheikh Jassim responded, unifying and leading a group of Qataris to battle, and defeated the Turks at the site of Wajbah. This battle is now annually commemorated as ‘National Day’, only first celebrated officially in 2007. Interestingly, National Day ‘has somewhat surpassed Independence Day, in the size and importance of the celebrations, despite beginning only in 2007’ (Fromherz, 2012, p. 61).

To properly consider national biobanking in Qatar, the particular nature of Qatari citizenship must be emphasised. In Qatar, citizens do not fund the state with taxes. Rather, the state supports the citizens in return for their consent in conferring power of governance to the Emir. Moreover, Qatar’s population is heavily composed of non-Qataris. While Qatar’s population is 2.2 million (July 2015 estimate; Central Intelligence Agency, 2015b), Qataris are estimated to compose only 11 per cent of the population (Planning and Statistics Authority, 2015). Males greatly outnumber females, at a ratio of 3.39 male(s)/female, though this ratio varies by age (Figure 2; Central Intelligence Agency, 2015b).

Figure 2

Source: Central Intelligence Agency (2015b).

Rapid economic growth in the second half of the twentieth century has seen migrant workers flock to Qatar to help build the country, rendering the Qatari citizens a demographic minority, who enjoy exceptional state-sponsored welfare privileges (Babar, 2014). This raises the question of how a sense of national identity is produced, maintained, or publicly performed, in a country in which the citizens are highly outnumbered.

Historian Fromherz (2012, p. 29) writes that while Al-Thani family uses historical myths and heritage to maintain their rule, ‘tribal affiliation and solidarity is slowly being replaced by national solidarity’. Qatar is therefore in the process of transforming from a tribal, segmentary state towards a unitary state with power centralised. Al-Thani family has not used force to maintain their position but has used the idea of pre-oil Qatari independence to inculcate a sense of solidarity and loyalty to the state (Fromherz, 2012, p. 157). Fromherz argues that by glossing over history, they attempt to turn ‘tribal affiliation into a sanitised form of “heritage”’ and maintain power of the state (2012, p. 160). Following the previous analysis of the role of biobanks and ethnic genetics in Israel, I now compare the ways in which the Qatari national biobank (QB) relates to this context of national development and consider the role of the QB in relation to Qatari national identity.⁸

QB⁹ is a centre within the Qatar Foundation, created in collaboration with Hamad Medical Corporation and Supreme Council of Health, with the broad goal of furthering medical research on Qatari health issues. Its pilot phase began in 2013, and since 2014, it is in the biobank initiation phase. QB is a collection of samples and information on health and lifestyle of members of the population of Qatar, and also offers research opportunities for Qataris as well as scientists and clinicians from the region and the world. QB aims to become not only a resource for Qatar but also a globally recognised and competitive institution. Its website states ‘QB is a scientific and altruistic partnership between the research community and the people of Qatar to build a better, healthier future for generations to come’.¹⁰ Its principal mission is to act as the Qatar National Centre for biological samples and health information to enable research towards the discovery and development of new healthcare interventions.¹⁰ QB recruits participants at public events, through news media and individuals can register on the QB website to participate. The process of donating takes around three hours and involves giving samples of urine, saliva and blood, and undergoing a series of measurements (height, weight, grip strength, blood pressure, body composition, heart and lung function). Participants also complete a questionnaire.

Probably the greatest health concerns for the Qatari population are obesity and, relatedly, diabetes. A 2015 report of QB reported that 17 per cent of the adult population suffers from Type 2 diabetes.¹⁰ QB also released findings from a pilot study that addressed the physical activity of Qataris and the dominant reasons for clinical referral.¹¹ The study report is based on research between September 2013 and October 2014, with 1,200 samples collected during QB’s pilot phase. Of these participants, 864 are male participants and 1,142 are female, and while all age groups are represented in the sample, the majority of the participants are between 22 to 38 years old. The distribution of samples collected is not proportionally representative of the demography of Qatar. In particular, the samples are distributed with relative balance between male and female donors, and while Qatari participants stand at 2,360, non-Qatari participants number less than 700 (Table 2). In the demographic sense, the biobank is not a proportionate representative assembly of the residents of the territory under Qatari sovereignty.

Table 2

Qatar Biobank Participant Data

	Number of participants
Total	3,022
Male	1,594
Female	1,428
Total Qatari Participants	2,360
Male Qatari	1,179
Female Qatari	1,181

Source: Qatar Biobank, http://www.qatarbiobank.org.qa/research/key-figures (accessed on 28 November 2015).

Notes: Between January 2013 and January 2015, ‘3,022 participants have provided samples. From these figures, 2,360 of the participants are Qatari.’

QB aims to recruit more than 60,000 participants by 2019.¹² Any adult (over 18 years) that is either a Qatari national or long-term resident (having lived in Qatar at least 15 years) can contribute to QB. As of January 2015, QB has recorded 2,006 participants, 1,500 of whom are Qatari and 506 of whom are long-term residents.¹³

As genetic and health information and samples contributed grow in number, researchers will be able to study how lifestyle, environment and genes affect health and illness. This makes QB distinct from the Israeli biobank in that it aims to gather data that can help couple genetics and lifestyle factors to disease. The knowledge produced, it is assumed, could help in the development of better medical treatments and disease prevention measures for Qataris and future generations of all mankind. The QB website states that until now most medical treatments have been developed through the study of Western populations and that there has been a lack of large-scale research on populations in Qatar and the region. In addressing this ethnic imbalance, QB is one of the most ambitious biobanks in the region, and it aims to play a key role in helping prevent and improve treatment of, diseases that affect Qatari populations. Further, QB claims that the knowledge produced will lead to tailored healthcare and precision medicines. Indeed, QB’s 2015 report states it ‘will chart a road map for future treatment through personalised medicine’ (Qatar Biobank, 2015, p. 7). Dr Asma Al-Thani, vice chairperson of Qatar Biobank Board of Trustees, states ‘Qatar’s scientist and research community recognises the current shift from traditional genomics, as the mapping of an individual’s DNA, to the population-based studies institutions across the world’ (Qatar Biobank, 2015, p. 7). The biobank thus situates itself as at the forefront of genetic research, and similar to the Israeli national biobank, it recognises the shift from traditional genetics and biobanking to genomic analysis. Such research, however, raises ethical concerns about sharing sensitive data and health predictions. Consequently, researchers in Doha have been discussing the Islamic ethical issues of genome research, especially in relation to incidental findings that arise, and which may cause harm if communicated to patients (Ghaly et al., 2016).

QB also produces an image of a specific population when it collects samples and presents public health data. The gender, ethnic and age distributions for the initial participants significantly differ from the population data for the whole of Qatar. The population represented through QB produces a picture of society with a symmetrical, gender-balanced population when compared to the actual demography. The way in which QB has assembled citizens as participants, or the way in which predominantly Qatari citizens have been represented as biological citizens, serves a ‘normalisation’, or to borrow a phrase from Qatar’s development literature and public discourse, a Qatarisation, of the biobank population. Through the assembly of Qatari samples in QB, Qatari citizens gain a privileged representation. A demographic threat to the national dominance or identity of the Qatari nationals by a large segment of the population is assuaged through the assembling of biological samples in a way that presents a picture of the population that foregrounds Qataris. In this sense, QB can be regarded as a part of the Qatari nation-building project at the symbolic level. In this reading, QB is co-produced with an emergent Qatari national identity.

In more concrete terms, however, QB also produces a lived moral community for performing citizenship at the level of biology. QB offers a chance for Qataris to participate in the process of producing these data, as ‘citizen scientists’. Dr Hadi Abderrahim, managing director of QB, sees the biobank as an opportunity to bring in the public as participants and as partners. He claims:

Qatar Biobank does not only aim at recruiting the public to take part in biomedical research but also wishes to partner with our public and help them become ‘citizen scientists’ who, through their personal contributions, play an active role in the process. As such, Qatar Biobank’s recruitment approach provides a model for public involvement in biomedical research and promotes Qatar’s dedication to raising awareness and commitment, engaging the community in shaping a better health of their future generations. (Qatar Biobank, 2015, p. 8)

QB also forms a social contract between Qatari citizens and the global scientific community. Dr Hanan Al Kuwari, chairperson of the Biobank, and Qatar board of trustees says: ‘Qatar biobank is a scientific and altruistic partnership between the research community and the people of Qatar to build a better, healthier future for generations to come’.¹⁰ In his view, the biobank constitutes a relationship between the global research community, which extends far beyond Qatar, and the people of Qatar. The biobank is not conceived as a state entity, nor as a collective of Qatari interests. Instead, the relationship between Qatar and the global research community is emphasised, positing Qatar as an equal with other globally networked biobanking nations, and their associated research endeavours. It is the international biomedical research community that is considered the benefitting partner collaborating with the biobank, and not the Qatari people themselves. In addressing the specific benefits to the researchers, QB states that

The unique breadth and depth of the information and samples collected by Qatar Biobank on the population of Qatar will allow researchers to advance the understanding of local and regional health and disease to enable new and exciting developments in healthcare and medicine.¹³

QB is not constructing a genetic narrative about the origins of the Qatari people through genetics, although this could emerge later on. Rather, the specific medical needs of a population that have resulted from rapid modernisation and urbanisation combine with the state’s aim to be at the highest level of biomedical development, particularly in terms of precision medicine. In the biobank, the specific industrial development goal of Qatar, namely becoming a high-end player in the global biosciences, is entangled with emerging medical problems. The biobank, therefore, achieves several things: It creates a material resource of biological samples that can be recruited to draw human capital to Qatar, in the form of scientists, clinicians, nurses and healthcare professionals, which thereby connect Qatar with the global infrastructure; it will give citizens a chance to perform their nationality and citizenship by giving blood, a potent symbol of life, solidarity and relatedness; and it allows the imagination and performance of a national identity, which complements the emerging culture of nationalism that it in turn bolsters.

Conclusion

This article has described how biobanking in Qatar and Israel relates to the ethnic and national context, the populations of their territories, the building of national community and participation in global science. Both biobanks make claims to being ‘exceptional’, by virtue of the complex genetic diversity that characterises Israeli and Qatari populations. Such claims are neither surprising nor themselves exceptional, as an existing literature on biobanks has described the relationships between national identities, state-led governance and the pursuit of the nation as a unique and sovereign biological resource (see Fortun, 2008; Gottweis & Petersen, 2008; Rabinow, 1999). It is commonly accepted that genetic diversity renders biobank a valuable research tool in the push towards global precision medicine. But in Qatar and Israel, unique relationships between citizens, state and national biobank are at play. The important distinctions between the representative function and character of the two biobanks are presented in an abbreviated form in Table 3.

Table 3

Summary Comparison of Israeli and Qatari Biobanks

	NLGIP	Qatar Biobank
Initial funding	Israeli Academy of Sciences and Humanities (funded by the State)	Qatar Foundation (funded by the State)
Genetic nature of the population	‘an exceptional mix of varied populations from diverse ethnic backgrounds’ (Gurwitz et al., 2003, p. 3)	‘Qatar has probably the most diverse patient population in the world’¹⁴
Number of samples (as of 29 November 2015)	1,673 (unrelated)	3,022 (participants)
Representative of total resident population	Yes	No
Current use	Repository and research resource	Emerging, and imagined to improve health of Qatari population
Genomic data available	No	Yes
Future aims	Currently planning transition to research on personalised/precision medicine	60,000 participants
Description of the social role of the biobank	‘national repository for human cell lines and DNA samples representing the large variation of Israeli and several Middle Eastern populations’ (Gurwitz et al., 2003, p. 5)	‘a scientific and altruistic partnership between the research community and the people of Qatar’¹⁰
Biobank goal	Global biobanking	State and capacity building
Regulatory overseer	Tel Aviv University, Institutional Review Board (an academic institution)	Supreme Council of Health (a national ministry)

Source: The author.

The most important distinction between these two biobanks is their representative character in relation to the demography of the two states. The Qatari biobank disproportionately represents the Qatari national minority. In this regard, it is a national representative space that diminishes the presence of other residents. The Israeli biobank, by distinction, has a representative diversity of participants that broadly reflects the demographic character and diversity of the state’s territory. It includes samples from the ethnic Arab, Muslim, Druze and Christian minorities that are not formally represented by the state and its symbols, which are predominantly Jewish in character. The Israeli biobank itself does not explicitly emphasise the shared genetic basis of the whole Jewish people, nor the shared genetic heritage of the different ethnic Jewish groups, however, some studies emerging from samples issued by the biobank have made historical claims about Jewish origins. Rather, the Israeli biobank was founded with the intention of serving a project of furthering biomedical knowledge of the diversity of the human species. Accordingly, Prainsack’s (2007, p. 86) study of Israeli biobanks has similarly found that rather than creating novel identities, ‘biobank projects are more likely to obtain public support and trust if the concepts and terminologies that materialise in biobank practices correspond with established narratives in a particular society’. Similarly, Siegal (2015, p. 767) recently found ‘a striking absence of antagonism between the goals of science and the public good characterises Israeli discourse’. In line with these viewpoints, the NLGIP reflects established Israeli concepts and ethnic identities rather than challenging them. However, the Israeli national biobank does not receive direct funding directly from the government. It is supported by unrelated individual and competitive grants that must be renewed. In this sense, the NLGIP is relatively uncoupled from the apparatuses of state or any direct government policy.

Thus far, QB has stated its intentions to help uncover the genetic structure of the Qatari people, but it is unclear if this research will emphasise a historical presence in Qatar, underscoring the legitimate sovereign rights of the state, or if this genetic structure will preferentially emphasise the diverse origins of the Qatari population across the Gulf region and Indian ocean territory. QB is funded generously by the Qatar Foundation, which is supported by the state. QB’s related biomedical developments, like the Qatar Genome Project, are drawing professional migrant workers from across the world and helping Qatar become a competitive nation in the global move towards precision medicine. The NLGIP, by distinction, without genetic data, or detailed personal medical histories, has become relatively less used in the current move towards big data analytics that foregrounds the search for biomarkers for precision therapies. The next phase of the NLGIP’s development, the current custodians have informed me, will, therefore, be a transition to work on precision medicine.

These findings reveal significant differences in the relationships between the state, the imagination of global science and the medical science of national populations. In Qatar, the biobank is part of state-backed biomedical capacity building and attending to the citizen population’s particular health needs. In Israel, however, the national biobank, which is older, exists in relatively precarious circumstances, with no mandate invested in it by the state. Nor is it guaranteed future support. Nonetheless, both biobanks, and the associated research endeavours they facilitate, reinforce national identities. The principal distinction between the two biobanks is one of scale, which is a consequence of the support each biobank is lent by state and semi-state bodies. But crucially, the imaginations of nationality that both biobanks afford are rendered possible by participation in what is imagined as global science. For the NGLIP, this ‘global science’ was initially the first wave of biobanking in the 1990s, leading to the human genome project. Today, the current wave of global science is a run towards precision medicine. The entanglement of local ethnic identities with such global aspirations demonstrates the co-production of national identities and a delocalised discourse of a global scientific community. Theoretically, these findings affirm the interpretive utility of the idiom of coproduction in the study of global biobanks in specific national contexts. Empirically, they emphasise the value of the comparative method in the social study of science, and more specifically, they demonstrate that national biobanks are a rich site for investigating the dynamic character of ethnic and national identities in the contemporary Middle East.

Footnotes

Declaration of conflicting interests

The author declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Funding

This work was supported by: A postdoctoral fellowship from the Israel Institute; a travel grant from the Teschmacher Fund at Harvard University’s Department of Anthropology; an Arabian Peninsula research travel grant from Harvard University’s Center for Middle Eastern studies; and a Nanyang Assistant Professorship start-up grant from Nanyang Technological University.

Notes

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