We are delighted to announce our recent publication, “Impact of African-enriched GATM regulatory variants on creatinine-derived estimated glomerular filtration rate,” in Kidney International, which explores how genetics may contribute to inaccurate estimates of kidney function.

Serum creatinine is one the most commonly used markers of kidney function globally. The estimate of kidney function from creatinine concentration is known as an estimated glomerular filtration rate (eGFR), which serves as the diagnostic entry point into nephrology care. Yet the equations used to calculate eGFR have repeatedly been found to perform poorly across global populations, particularly in people of African ancestry. In this study, we asked whether genetics contribute to this bias by deeply examining a gene called GATM, which has been linked to both creatinine and eGFR in genome-wide association studies.

Drawing on genetic and functional genomic data from three continental African ancestry cohorts in South Africa and Uganda, we examined African-enriched variation at the GATM gene, which encodes a key enzyme in creatine synthesis. Strikingly, we found that alleles at this locus are present at nearly 50% frequency in African-ancestry groups, but nearly absent from other global populations. By integrating multiple datasets, we demonstrated that the African-enriched alleles increased creatine production, raising creatinine and lowering eGFR, yet showed no association with directly measured kidney function. This suggests that carriers may be at increased risk of being misclassified as having kidney disease. Our findings would not have been possible without the contributions of numerous independent functional genomic studies from across continental Africa, demonstrating the importance of expanding the inclusion of African-ancestry groups in genomic and nephrology research.

Finally, genomic and metabolomic data analyzed in this study were generated as a part of the African Research on Kidney Disease (ARK) consortium, co-designed as an independent project led by Dr. June Fabian, Director of Research at Wits University Donald Gordon Medical Centre. This work entailed a partnership with participating community members in Mpumalanga (Agincourt), South Africa. Re-analysis of genomic and phenotypic data from the Uganda Genome Resource (UGR) was performed in collaboration with Dr. Segun Fatumo, Professor and Chair of Genomic Diversity at Queen Mary University of London and Head of NCD Genomics at MRC/UVRI and LSHTM in Entebbe, Uganda. Functional genomic analysis of blood QTLs was made possible through our recently published South African Blood Regulatory (SABR) resource generated through a collaboration between the Sydney Brenner Institute for Molecular Bioscience at Wits University and Variant Bio. We are incredibly grateful to the participants across multiple studies and communities who chose to share their genomic and health data with researchers. We also recognize the many field workers, project coordinators, and researchers who contributed to making these collaborative studies a success.

New Publication Shows Importance of Including African-Ancestry Groups in Renal and Genomic Research was originally published in Variant Bio on Medium, where people are continuing the conversation by highlighting and responding to this story.

As Polynesians voyaged from island to island across the Pacific, each new settlement began with a small founding group. Two papers published this month show how strongly that history shaped Polynesian genomes, and why it matters for medicine. Both draw on whole genomes from more than 1,000 participants in French Polynesia’s Maʻi ʻuʻu study, which Variant Bio carried out together with clinicians, community leaders, and academic partners. The first, a Science cover study led by researchers from Stanford and UC San Diego with Variant Bio as co-author, found that Polynesian founder effects are at least ten times stronger than Finland’s, one of genetics’ textbook examples. These repeated bottlenecks pushed globally rare variants to high frequency. Variants causing kidney failure (FAN1), early lens dislocation (ADAMTSL4), and progressive vision loss (PDE6B) are each carried by 2.2% to 3.7% of French Polynesians. That is well above the level at which the American College of Medical Genetics and Genomics recommends population carrier screening. The FAN1 variant doesn’t appear once among the more than 800,000 genomes and exomes in gnomAD.

The same forces that concentrate disease risk also concentrate protection, and that is where the second paper, in Nature Communications and co-led by Variant Bio, comes in. Pairing genomes with deep phenotyping, metabolite, and gene-activity data, the team found hundreds of functional variants that are absent or rare in global databases. The standout is a likely loss-of-function variant in ANGPTL8, a regulator of fat metabolism. It is carried by more than 5% of the cohort but is entirely absent in European ancestry groups. Carriers had healthier lipid profiles, lower inflammatory markers, and lower gout risk. Because the variant is so common, researchers could study people with two disrupted copies, a natural preview of what a drug targeting the gene might do. The UK Biobank, despite its far larger size, has no such individuals. The study also linked a variant near LRMDA to more than double the odds of type 2 diabetes, and identified WDR1 as a new gene contributing to gout, which affects 14.5% of French Polynesians.

None of this would exist without the communities behind the data. The work began in 2021 with a consultation led by Tahitian consultants across all five French Polynesian archipelagos, which shaped how samples are handled and how findings return home. Variant Bio shares research benefits directly with participating communities through financial and community support. A committee that includes a Polynesian community representative oversees data access. As co-author Keolu Fox, PhD, of UC San Diego and advisor to Variant Bio put it, a variant carried by one in 45 French Polynesians was invisible to databases built from more than 800,000 people: “That is what underrepresentation costs.” The published work covers only part of the data generated in French Polynesia. More findings are on the way, and Variant Bio is expanding its partnerships across the South Pacific and beyond.

Read the press release here.

Two Papers From Variant Bio Led Study Describe Founder Effects and Genetic Variants in Polynesia was originally published in Variant Bio on Medium, where people are continuing the conversation by highlighting and responding to this story.

The best signal in a partnership is when both sides want to do more. Following on our $120mm deal with Boehringer Ingelheim (BI) on kidney disease earlier this year, we are thrilled to announce that after seeing the capabilities of our platform, BI has agreed to expand our existing collaboration into cardiovascular disease. This milestone doubles the value of the BI relationship to a total potential deal value of $250 million. The partnership demonstrates the strength of our AI-powered Inference platform to translate the richness of human genetic diversity into actionable drug targets at a speed and scale that wasn’t previously possible.

Read the press release here.

Expanding Our Target Discovery Collaboration with Boehringer Ingelheim into Cardiovascular Disease was originally published in Variant Bio on Medium, where people are continuing the conversation by highlighting and responding to this story.

Ever since Variant Bio first launched its unique benefit-sharing program in 2020, I have been involved in putting the program into practice, together with researchers around the world, from French Polynesia to Madagascar. In part due to the lack of a clear precedent for how to institutionalize the community-driven distribution of financial benefits in biomedical research, the process is rarely devoid of challenges. As we note in an article published earlier this year in Nature Communications on our approach to benefit sharing across rural and urban settings in South Africa, common challenges encountered include those involving mechanisms for managing funds, approaches to identifying and narrowing down potential beneficiaries, gender and other power imbalances, and long-term sustainability concerns.

As we continue to improve and iterate over time on our benefit-sharing program at Variant Bio, it is critical that we seek out and learn from thought leaders from a variety of disciplines and sectors who are paving the way towards more equitable biomedical research and public health interventions around the globe. Hence, I was deeply honored to join a group of invited guests led by Dr. Anatole Manzi, deputy chief medical officer and director of clinical quality and health systems strengthening at Partners In Health (PIH), in Rwanda this month. Dr. Manzi grew up in northern Rwanda and worked for years with one of my personal heroes, the late and great Dr. Paul Farmer, a physician-anthropologist who co-founded PIH and dedicated his life to improving and providing health care in some of the world’s most underserved countries and communities.

One of the highlights of the trip was visiting the University of Global Health Equity (UGHE) in Butaro, in the northern province of Rwanda. Since Paul Farmer co-founded it just ten years ago, UGHE has quickly grown to be an international model for health education, and is now among the highest-ranked universities in Africa. Paul Farmer intentionally established UGHE and the nearby cutting-edge Butaro Hospital in a rural and remote area to provide the highest quality medical education and care for residents who don’t live in major cities. In return for their studies to be completely cost-free, the students at UGHE agree to work as doctors in resource-poor regions in their country of origin for five years after graduating. This is far from just a theoretical move; the approach is institutionalized in practice through memoranda of understanding between UGHE and relevant ministries of health across Africa.

UGHE is unique not only for its record of academic excellence, but also ethical leadership and impact on Africa. During our visit, we had the chance to meet with medical students involved in the Butaro Scholars Program (BSP), a student-led initiative that provides academic support and mentorship to local schoolchildren in Butaro, the rural district where UGHE’s campus is located. The BSP program, much like UGHE itself, is guided by the notion that “equity is the only acceptable goal.” It fits into UGHE’s broader model that ties medical education directly to service in the surrounding community.

Medical students at UGHE are taught to “accompany” their patients into the worlds they inhabit, grasping not only the diseases they face, but also the challenges of poverty and social inequalities. At Variant Bio, where we focus on community-engaged genomic research, understanding the contexts from which study participants are drawn is critical to advancing better and more equitable science and drug discovery. Such “accompaniment” begins before a study ever takes place, and helps inform downstream interventions such as the distribution of short-and long-term benefits and the return of health and research results at the community level.

Following our visit to UGHE, we spent time learning from the work of Ireme Education for Social Impact (IESI, or Ireme as it is known for short), the local implementing and community partner in Rwanda for Move Up Global, a non-profit organization founded by Dr. Anatole Manzi dedicated to improving education and health in rural, northwest Rwanda. At Ireme, Dr. Manzi gave our group of invited guests a true taste of the notion of “accompaniment”; together with staff from Ireme and members of the local community, including children selected for Move Up Global’s Mount Muhabura scholarship program for high-achieving, low-income students, we hiked uphill through a farming village located near Volcanoes National Park to bring household supplies, furniture, a 2000-liter water storage tank, and various foodstuffs to a family of ten that Ireme had identified as especially vulnerable and built a new, modest home for.

As Dr. Manzi explained, “When it comes to helping underserved communities, we need to be thinking about a ‘bundle of interventions,’ rather than one-offs. If you only provide food, for example, but don’t address intestinal worms too, food alone won’t solve the issue. The eight children in this family were sleeping on a dirt floor all in one room together. When it rained the roof would leak and they would have to wake up in the middle of the night and stand until the water stopped pouring in. Of course these kids aren’t going to go to school the next day when this happens, of course they’re not going to be able to learn when they’re tired and hungry.”

Importantly, Dr. Manzi and the team from Ireme were providing the family with much more than perishable goods and even a newly built home; they were also providing them with potential sources of income, a sense of dignity and empowerment, and — perhaps most significantly — a source of hope. “You see, usually the children in this family have to spend hours every day fetching water. Now, with the water storage tank that will capture rainwater from the roof of their new home, the children will have more time to sleep and study, and the family may even choose to sell some of the extra water to other people in the village to earn money,” Dr. Manzi explained. “Where previously this family was marginalized in the community for their poverty and the father’s inability to perform physical labor due to his amputated leg, now they will gain a new social standing in their community. That is what we mean by a ‘bundle of interventions.’ That is how you make an intervention more sustainable in the long term.”

To carry out this bundle of interventions took incredible effort and coordination not only by Dr. Manzi and staff from Ireme, but also dozens of people from the community who participated in building the family a new house and garden and transporting sundry supplies up the hill for them. Such a communal effort is not unusual in Rwanda. On the last Saturday of each month, through a nationwide community service day called Umuganda, citizens of various ages come together to do collective work — things like street cleaning, building infrastructure, planting trees, or other public works projects benefiting their local community. The practice, which has deep roots in Rwanda’s history and culture, was revived and formalized by the government after the 1994 genocide as part of national rebuilding and reconciliation efforts.

Finally, in addition to meetings and discussions with thought leaders from the University of Global Health Equity and the Move up Global Ireme team, I also had the chance to visit an educational initiative in eastern Rwanda directed by Chaste Niwe, a former student of mine from my teaching days in anthropology at Yale University. Chaste is now managing director of Rwanda’s innovative Isomo Scholars Program, developed by Africans for Africans to create scalable Africa-centered learning interventions for Rwanda’s next generation of leaders.

Each year, the Isomo Scholars Program selects 80 of the most promising students from among thousands of applicants from across Rwanda — the majority from low-income and rural backgrounds, including refugees. Over three years, Scholars progress through intensive summer residential programs and a post–high school gap year that combines advanced coursework, professional internships, and personalized university counseling. During the day I spent with Chaste and Isomo Scholars at their intensive summer residential program in eastern Rwanda, I met students from across all three years of the program. The vast majority of these students specialize in STEM in their respective high schools across Rwanda, and many of them are interested in careers in medicine and biotechnology.

While visiting Isomo, in addition to discussing the work I do as an applied anthropologist at Variant Bio with students enrolled in the program, I was invited to present a talk titled “Through the Looking-Glass: Anthropology, Ethics, and the Worlds We Build in Genomic Science” as part of the Isomo Lecture Series for faculty, staff, and teaching fellows. In this lecture and the ensuing Q&A, I discussed what it would mean to build a genomics industry that gives back as much as it takes from the communities it studies, and what anthropology’s oldest method — living inside another person’s world in order to understand it — has to teach scientists involved in biomedical and genomic research around the globe.

In the end, my time in Rwanda raised so many important and illustrative points on the true meaning of equity, partnership, and sustainable community interventions. As we have begun rolling out revenue sharing for the first time this year, due to a partnership we entered into with Novo Nordisk, these considerations are more critical for us than ever. Going forward, there are many lessons that Variant Bio can learn from Rwanda in terms of how to improve and iterate on the short-term benefit-sharing program we have already put into practice around the world for the past six years. What might “accompaniment” look like, for example, when it comes to benefit-sharing initiatives in biomedical and genomic research? How can we weave in “bundled interventions” and further educational and training opportunities for the next generation of Indigenous and African leaders as part of our studies? What could Rwanda’s communal labor practices, or Umuganda, teach us as a company about partnership, community service, and long-term sustainability? For these and other thought-provoking questions, I am grateful to the leaders and students I met with in Rwanda this month. Now it’s time for Variant Bio and others in the industry to “think bigger, build bigger, and counter [our] failures of imagination.”

Taking Notes from Rwanda: Lessons on Equity, Partnership, and Sustainable Community Interventions was originally published in Variant Bio on Medium, where people are continuing the conversation by highlighting and responding to this story.

Note: See below for French and Tahitian translations of this article.

Last fall, Variant Bio, together with Novo Nordisk and the Groupement des Hôpitaux de l’Institut Catholique de Lille (GHICL) in France, launched a genomic study called Fenua Metabogout on gout, inflammation, and metabolic diseases in Tahiti. This project was the first of a number of new studies Variant Bio has embarked on with Novo Nordisk since entering a collaboration together last year (see here for coverage of our partnership with Novo Nordisk in The New York Times). So far, we have also launched genomic research projects with Novo Nordisk similarly focused on metabolic health in Samoa, in Aotearoa New Zealand, and in Bangladesh.

We recently concluded recruitment for the study with Novo Nordisk in Tahiti after recruiting a total of ~1,800 participants. Approximately 150 of these participants had also been a part of an earlier study Variant Bio collaborated on in French Polynesia with Dr. Tristan Pascart, one of the world’s leading experts on gout. As this most recent phase of the research drew to a close, Tristan and I visited Tahiti to gather feedback about the project from a diverse range of community stakeholders, share preliminary results from the study via interviews and media coverage, and finalize the selection of local beneficiaries for both Variant Bio’s short-and long-term benefit-sharing programs.

Going forward, Tristan will work with the French Polynesian Ministry of Health, the Direction de la santé de Polynésie française, and the Agence de régulation de l’action sanitaire et sociale (ARASS) in Tahiti to further share results and recommendations with the public based on the research we have carried out together over the years. While in Tahiti this year, Tristan and I already began the process of sharing preliminary results from the study via key local media outlets, including TNTV News, Polynésie La 1ère (print articles in January and April and TV coverage broadcast across French Polynesia and France), and the popular L’Invité Café radio program.

Following our visits to Tahiti, my colleague Dr. Melissa Hendershott went there to work with members of the team in Papeete and from GHICL to close out the administrative side of the project. While the main focus of the trip was to archive all the paperwork associated with such a large project, including documentation of protocols and participant consents, it also provided an opportunity to thank the many people who helped make the project a success. This included thanking members of the Centre Hospitalier de Polynésie française lab, who were responsible for generating clinical data that was returned to participants and the sample management, as well as some of the doctors working in Tahiti who contributed to the research. The group was also able to spend time with nurses who were part of the study. We are incredibly grateful for their work recruiting and communicating with participants about the Fenua Metabogout study.

Additionally, whenever a study comes to a close, there are often leftover materials that need to find a home locally so that they do not go to waste. In the case of the Fenua Metabogout study in Tahiti, we worked with community stakeholders and study team members to distribute any remaining useful items such as tables and chairs, laptops, phones, tshirts, etc. to local NGOs working with underserved youth and unhoused communities, among others.

Now that the sample and data collection for the study are complete, we have distributed short-term benefit-sharing funds to the health education NGO Asalée Polynésie, a beneficiary proposed by various stakeholders in Tahiti. The group’s primary goal is to provide empowering in-person health education opportunities and digital resources for people living with chronic diseases across French Polynesia. As usual with Variant Bio’s approach to benefit sharing, we rely on stakeholders in the community to identify and nominate potential trusted beneficiaries based on local priorities and needs, rather than imposing top-down funding decisions from afar.

Finally, because we generated revenue for the first time last year via our partnership with Novo Nordisk, we are now in the process of distributing long-term benefit-sharing funds to all eligible projects Variant Bio has collaborated on since the company was founded about seven years ago. This includes the first study we carried out in French Polynesia in 2021. For this project, we have recently distributed revenue-sharing funds to two NGOs in Tahiti with a focus on health: Asalée Polynésie (also a beneficiary based on the Fenua Metabogout study) and the Association polynésienne d’éducation thérapeutique (APE’E). Given the fact that gout is a major public health concern across French Polynesia, APEE plans to use these funds towards specifically gout-focused health education workshops at the Taaone public hospital center in Tahiti.

Above all, we are grateful to the people of Tahiti for their time and trust, and we cannot wait to return in the next year or so to share further results from the research.

French translation

Clôture du recrutement pour un projet sur la santé métabolique à Tahiti

L’automne dernier, Variant Bio, en collaboration avec Novo Nordisk et le Groupement des Hôpitaux de l’Institut Catholique de Lille (GHICL) en France, a lancé une étude génomique appelée Fenua Metabogout portant sur la goutte, l’inflammation et les maladies métaboliques à Tahiti. Ce projet est le premier d’une série de nouvelles études entreprises par Variant Bio avec Novo Nordisk depuis le début de leur collaboration l’année dernière (voir ici la couverture de notre partenariat avec Novo Nordisk dans le New York Times). À ce jour, nous avons également lancé des projets de recherche génomique avec Novo Nordisk, axés de la même façon sur la santé métabolique, aux Samoa, en Aotearoa Nouvelle-Zélande et au Bangladesh.

Nous avons récemment conclu le recrutement pour l’étude menée avec Novo Nordisk à Tahiti après avoir recruté un total d’environ 1 800 participants. Environ 150 d’entre eux avaient également pris part à une étude antérieure que Variant Bio avait réalisée en Polynésie française avec le Dr Tristan Pascart, l’un des plus grands experts mondiaux de la goutte. Alors que cette phase de recherche touchait à sa fin, Tristan et moi nous sommes rendus à Tahiti afin de recueillir les avis de divers acteurs locaux sur le projet, de partager les résultats préliminaires de l’étude par le biais d’interviews et de couvertures médiatiques, et de finaliser la sélection des bénéficiaires locaux pour les programmes de partage des bénéfices à court et à long terme de Variant Bio.

À l’avenir, Tristan collaborera avec le Ministère de la Santé de Polynésie française, la Direction de la santé de Polynésie française et l’Agence de régulation de l’action sanitaire et sociale (ARASS) à Tahiti pour continuer à partager avec le public les résultats et recommandations issus des recherches que nous avons menées ensemble au fil des années. Lors de notre séjour à Tahiti cette année, Tristan et moi avons déjà entamé la diffusion des résultats préliminaires de l’étude auprès des principaux médias locaux, notamment TNTV, Polynésie La 1ère (articles en janvier et avril ainsi qu’une couverture télévisée diffusée en Polynésie française et en France) et l’émission de radio très écoutée L’Invité Café.

À la suite de nos visites à Tahiti, ma collègue Dr Melissa Hendershott s’y est rendue pour travailler avec des membres de l’équipe à Papeete et du GHICL afin de clôturer la partie administrative du projet. Bien que l’objectif principal du séjour ait été d’archiver l’ensemble des documents liés à un projet d’une telle envergure — notamment la documentation des protocoles et des consentements des participants — , il a également offert l’occasion de remercier les nombreuses personnes qui ont contribué à la réussite du projet. Cela comprenait les membres du laboratoire du Centre Hospitalier de Polynésie française, responsables de la production des données cliniques restituées aux participants et de la gestion des échantillons, ainsi que certains médecins travaillant à Tahiti qui ont contribué à la recherche. L’équipe a également pu passer du temps avec les infirmier(ère)s qui ont participé à l’étude. Nous leur sommes infiniment reconnaissants pour leur travail de recrutement et de communication avec les participants dans le cadre de l’étude Fenua Metabogout.

Par ailleurs, la clôture d’une étude s’accompagne souvent d’un reliquat de matériel qu’il convient de redistribuer localement pour éviter tout gaspillage. Dans le cas de l’étude Fenua Metabogout à Tahiti, nous avons collaboré avec des acteurs locaux et les membres de l’équipe de recherche pour distribuer les articles utiles restants — tels que des tables et des chaises, des ordinateurs portables, des téléphones, des t-shirts, etc. — à des ONG locales œuvrant notamment auprès des jeunes défavorisés et des personnes sans domicile fixe, entre autres.

Maintenant que la collecte des échantillons et des données de l’étude est terminée, nous avons versé des fonds de partage des bénéfices à court terme à l’ONG d’éducation thérapeutique Asalée Polynésie, une organisation désignée par diverses parties prenantes à Tahiti. L’objectif principal de ce groupe est de proposer des opportunités d’éducation à la santé en présentiel, ainsi que des ressources numériques permettant aux personnes vivant avec des maladies chroniques à travers la Polynésie française de mieux prendre en charge leur santé. Fidèles à l’approche de Variant Bio en matière de partage de bénéfices, nous nous appuyons sur les acteurs locaux pour identifier et proposer des bénéficiaires de confiance en fonction des priorités et des besoins locaux, plutôt que d’imposer des décisions de financement prises à distance.

Enfin, comme nous avons généré des revenus pour la première fois l’année dernière grâce à notre partenariat avec Novo Nordisk, nous procédons actuellement à la distribution de fonds de partage des bénéfices à long terme pour tous les projets éligibles auxquels Variant Bio a collaboré depuis sa création, il y a environ sept ans. Cela inclut la première étude que nous avons menée en Polynésie française en 2021. Pour ce projet, nous avons récemment versé des fonds issus du partage des revenus à deux ONG tahitiennes œuvrant dans le domaine de la santé : Asalée Polynésie (également bénéficiaire au titre de l’étude Fenua Metabogout) et l’Association polynésienne d’éducation thérapeutique (APE’E). La goutte constituant un enjeu majeur de santé publique en Polynésie française, l’APE’E prévoit d’utiliser ces fonds pour organiser des ateliers d’éducation à la santé spécifiquement consacrés à cette maladie au Centre hospitalier de Taaone, à Tahiti.

Nous tenons avant tout à remercier la population de Tahiti pour le temps qu’elle nous a consacré et pour sa confiance ; nous sommes impatients d’y retourner, dans environ un an, pour partager de nouveaux résultats issus de ces recherches.

Tahitian translation

Hopeʻaraʻa o te tihepuraʻa nō te hōʻē ʻŌpuaraʻa Ea Metapori i Tahiti

I te tau haʻapoheraʻa rāʻau i maʻiri aʻe nei, ʻua ʻāmui mai ʻo Variant Bio iā Novo Nordisk ʻe te Aupupu Hôpitaux de l’Institut Catholique de Lille (GHICL) i Farāni, nō te haʻamata i te hōʻē tuatāpaparaʻa tenoma tei piʻi hia Fenua Metabogout nō niʻa i te maʻi ʻūʻū, te maʻi ura, ʻe te mau maʻi metapori i te fenua Tahiti. Teie ʻōpuaraʻa, hōʻē o te tahi mau māʻimiraʻa ʻo tā Variant Bio i rave ʻāpīpiti hia e Novo Nordisk mai tō mātou faʻaauraʻa i te matahiti i mahemo aʻe nei (taiʻo mai i te parau o taua faʻaauraʻa ʻe Novo Nordisk i roto i The New York Times). Tae mai i teie mahana, ʻua haʻamata atoʻa mātou i te tahi mau ʻōpuaraʻa ʻe ʻo Novo Nordisk nō niʻa i te māʻimiraʻa pae tenoma ma te tūtonu i niʻa i te ea metapori i te fenua Hāmoa, i Aotearoa Niu Terani, ʻe i Panetātere.

Nō oti iā mātou te tihepuraʻa nō te tuatāpaparaʻa ʻe Novo Nordisk i Tahiti ʻe ʻua raʻe roa ai ~1,800 taʻata tei tihepu hia mai. Nau 150 taʻata paha o rātou tei tihepu ʻenā hia nō terā ra tuatāpaparaʻa tā Variant Bio i rave i mua mai, ʻāpīpiti hia e Taote Tristan Pascart i Pōrīnetia Farāni, te tahi teie o nā tahuʻa ʻaravihi roa aʻe nō niʻa i te maʻi ʻūʻū i te ao nei. I te piriraʻa mai te hopeʻa o teie tau māʻimiraʻa ʻāpī roa aʻe, ʻua fano māua ʻo Tristan i te fenua Tahiti nō te ʻapo i te mau manaʻo nō roto mai i te nahoʻa tiʻa huru rau nō Tahiti nō niʻa i taua ʻōpuaraʻa, ma te heheu i tei ʻite hia nō niʻa i taua tuatāpaparaʻa nā roto i te tauʻaparauraʻa, te haʻaparareraʻa ʻe te māʻitiraʻa i vetoʻofanu taʻata tē riro i te fānaʻo i nā faʻanahoraʻa tau poto ʻe tau roa atoʻa hoʻi a Variant Bio.

ʻA haʻa atu ai ʻo Tristan nā muri i te Faʻatereraʻa hau o te Ea nō Pōrīnetia Farāni, te Direction de la santé de Polynésie française, ʻe te Agence de régulation de l’action sanitaire et sociale (ARASS) i Tahiti nō te heheu atu ā i tei ʻite hia mai ʻe nō te aʻo i te huiraʻatira ʻia au i tei ʻite hia mai e mātou i te roaraʻa o te mau matahiti. I tōna faʻaearaʻa i Tahiti i teie matahiti, ʻenā māua Tristan te haʻamataraʻa i te heheu i tei ʻite hia mai i roto atu i te puʻeraʻa mītia rarahi o te fenua, mai iā TNTV News, Pōrīnetia Tahi (parau nēʻi hia i Tenuare ʻe Eperera ra ʻe haʻapurororaʻa TV ʻati aʻe ʻo Pōrīnetia Farāni ʻe ʻo Farāni), ʻe i roto atoʻa i te faʻanahoraʻa tuʻiroʻo L’Invité Café.

I muri mai i tō māua tere i Tahiti, ʻua haere ʻo Taote Melissa Hendershott i reira nō te haʻa nā muri i te mau mero o te pupu i Papeʻete ʻe te GHICL nō te faʻahope roa ʻino i te ʻōpuaraʻa i te pae a te hau. Te fā o teie tere, nō te rave faʻaʻupu i terā rahiraʻa pāpiē e vai nei nō te rahi hoʻi o taua ʻōpuaraʻa ra, mai te puta arataʻi ʻe te faʻatiʻaraʻa nō roto mai i te mau taʻata, ʻe ʻua riro atoʻa te reira ʻei taime nō te haʻamāuruuru i te nahoʻa rahi tei tauturu mai ʻia manuia teie ʻōpuaraʻa. ʻO te mau rave ʻohipa o te pū tāmatamataraʻa o te Fare Maʻi nō Taʻaone te tahi o rātou tei haʻamāuruuru hia, inaha hoʻi, nā rātou i huihui i te ʻā ora, ʻo tei faʻahoʻi hia hoʻi i te mau taʻata ʻe nā rātou atoʻa i arataʻi i te haruharuraʻa, ʻe tae noa atu i toʻofanu taote e haʻa ra i Tahiti, ʻo tei ʻāmui atoʻa mai i roto i teie māʻimiraʻa. ʻUa nehenehe atoʻa tā te pupu e fārerei i te mau utuutu maʻi ʻo tei ʻāmui atoʻa i roto i teie tuatāpaparaʻa. ʻUa māuruuru roa mātou nō te ʻohipa tā rātou i rave nō te tihepu i te mau taʻata ʻe nō te haʻamāramarama iā rātou nō niʻa i te tuatāpaparaʻa Fenua Metabogout.

ʻE, mai tei mātau hia i te hopeʻa o te hōʻē tuatāpaparaʻa, tē vai nei te tahi mau taihaʻa e toe mai nei i te fenua ra nō te taʻata ʻia rave, ʻeiaha paʻi ʻia faʻaruʻe hia atu. Nō te tuatāpaparaʻa Fenua Metabogout, ʻua haʻa mātou ʻe te nahoʻa tiʻa huru rau ʻe tae noa atu i te mau mero o te pupu tuatāpapa nō te ʻōperepere i te aha atu toeʻa taihaʻa, mai te ʻairaʻa māʻa ʻe te pārahiraʻa, rorouira manaʻa, niuniu, piriaro, ʻe te vai atu ā i te mau tāʻatiraʻa o te fenua e haʻa nei nō te feiā ʻāpī navaʻi ʻore ʻe te feiā nohoraʻa ʻore, ʻe te tahi atu mau ā.

I oti te toto ʻe te ʻā ora i te huihuiraʻa hia nō te tuatāpaparaʻa, ʻua ʻōperepere mātou i te tino moni ʻāpī tau poto i te mau tāʻatiraʻa haʻapiʻi ea ʻo Asalée Polynésie, ʻo tei tohu hia mai e te tahi o te nahoʻa tiʻa huru rau i Tahiti. Te fā mātāmua o te pupu, ʻoia hoʻi, ʻia hōroʻa tino roa i te mauihaʻa haʻapiʻiraʻa nō te haʻamaitaʻi i te ea ʻe ʻia fānaʻo te feiā tei roʻo pinepine hia i te maʻi i te mauihaʻa patapata rorouira ʻati aʻe ʻo Pōrīnetia Farāni. Mai tei mātaro noa hia nō te raveraʻa o Variant Bio nō te ʻōperepere i te ʻāpī, e turuʻi mātou i niʻa i te nahoʻa tiʻa huru rau i rotopū i te vaʻa mataʻeinaʻa nō te ʻimi ʻe nō te nōmino i te tahi mau tino pāpū e riro i te fānaʻo i te ʻāpī, ʻia au i te mau ʻohipa rū ʻe te hinaʻaro atoʻa o te mataʻeinaʻa, ʻeiaha paʻi ʻia nā niʻa roa anaʻe mai te faʻaotiraʻa atu.

ʻEi pūʻohuraʻa, nō te ʻāpī hoʻi tei noaʻa mātāmua hia i te matahiti i maʻiri aʻe nei nā roto mai i tō mātou haʻaraʻa ʻāmui ʻe Novo Nordisk e haʻamata ai mātou i te ʻōperepere i te tino moni ʻāpī tau poto nō nā ʻōpuaraʻa tano tā Variant Bio i haʻa ʻāmui, mai te haʻamauraʻa hia te taiete a hitu matahiti i teie nei. Hōʻē o te reira, ʻo te tuatāpaparaʻa mātāmua īa ʻo tā mātou i rave i Pōrīnetia Farāni i te matahiti 2021 ra. Nō teie ʻōpuaraʻa, nō haʻamata atu ra mātou i te ʻōperepere i te tino moni ʻāpī i nā tāʻatiraʻa e piti i Tahiti, ma te tūtonu i niʻa i te ea: Asalée Polynésie (te tahi atoʻa tino fānaʻo teie nō te tuatāpaparaʻa Fenua Metabogout) ʻe te Association polynésienne d’éducation thérapeutique (APE’E). I te mea hoʻi ē, e mea peʻapeʻa roa te maʻi ʻūʻū nō te ea o te taʻata ʻati aʻe ʻo Pōrīnetia Farāni, i faʻaoti ai ʻo APEE e rave rātou i taua tino moni nō te haʻapiʻipiʻi i te taʻata nāhea e ārai i te maʻi ʻūʻū i roto ihoā i te Fare Maʻi nō Taʻaone i Tahiti.

Nā mua roa, ʻua māʻueʻue roa mātou i te nūnaʻa nō te Tahiti nō tō rātou taime ʻe tō rātou tiʻaturi, ʻe ʻua rahi tō mātou rutaruta nō te hoʻi faʻahou i teie matahiti i mua nei paha nō te horahora atu ā i tei ʻite hia mai i roto i taua māʻimiraʻa.

Concluding Recruitment for a Project on Metabolic Health in Tahiti was originally published in Variant Bio on Medium, where people are continuing the conversation by highlighting and responding to this story.

In 2022, Variant Bio entered a genomic research partnership with the Faroe Genome (FarGen) project and the University of Copenhagen. Today, we are thrilled to share our paper on Faroese ancestral history published in eLife. The paper, drawing on whole-genome sequencing data from 40 Faroese individuals, explores how the genetic diversity of Faroese people contributes to their health (see here for a high-level summary of our conclusions).

As I discuss in an accompanying press release also published this week, no population genomic studies of this scale have yet been carried out on whole-genome sequencing data from Faroese individuals to date. An in-depth analysis of individuals’ genomic architecture may reveal how the islands’ demographic history has contributed to present-day health and disease in the population and may shed light on why there’s a high prevalence of certain diseases such as type 2 diabetes and multiple sclerosis.

Importantly, all sequencing for the study took place locally, in the FarGen laboratory on the Faroe Islands. Variant Bio’s benefit-sharing program for this project supported the generation of the first whole genome sequencing of Faroese DNA. Going forward, data collected through the FarGen project will also help inform public health approaches in the Faroe Islands.

Paper on Faroese Ancestral History and Health Published in eLife was originally published in Variant Bio on Medium, where people are continuing the conversation by highlighting and responding to this story.

Note: See below for the Bangla translation of this article.

Recently, Variant Bio’s partnerships team members have been traveling to different regions of the world to launch a number of new studies as part of our collaboration with Novo Nordisk. Over the last six months, we launched several new studies with Novo Nordisk, including one in French Polynesia, one in Samoa, and one in Aotearoa New Zealand.

I am very excited to be part of Variant Bio and Novo Nordisk’s lean Type 2 diabetes study in Bangladesh in partnership with the International Centre for Diarrhoeal Disease Research, Bangladesh (icddr,b). This project has been approved by the Ethical Review Committee (ERC) of icddr,b, and is being carried out in the capital city of Dhaka by an all-Bangladeshi study team of amazing medical doctors, phlebotomists (skilled blood collection technicians), nurses, and co-investigators under the dynamic leadership of Dr. Aliya Naheed.

Traveling from the Pacific Northwest to South Asia last year was one of the longest journeys I’ve taken. Surprisingly, the vibrant energy of Dhaka–its bustling streets and constant honking–quickly pushed my jetlag aside and helped me dive into a busy work week despite the 14-hour time difference.

We recently marked an important milestone by launching recruitment for the study at two hospitals in Dhaka: a large general hospital that serves 7,000 patients per day, and a private hospital with a daily patient volume of 500. Yet the formal launch of the study was not the true beginning of the project. It followed months of preparation, community engagement, research scoping, and dedicated training designed to ensure that the teams in Dhaka were equipped to conduct the research with rigor, confidence, and respect.

The prevalence of diabetes is rising globally, with the number of affected individuals projected to increase from 589 million in 2024 to 853 million by 2050. According to the 2025 International Diabetes Federation (IDF) Diabetes Atlas, 11.1% of adults worldwide aged 20–79–roughly 1 in 9–are living with diabetes, and about half of them (40%) are unaware of their diagnosis. Prior to the discovery of insulin in the early 20th century, a diagnosis of diabetes, particularly type 1 diabetes, was often fatal, with patients surviving only months to a few years. The large-scale production and global distribution of insulin, led by companies such as Novo Nordisk, transformed diabetes from an acute, life-threatening illness into a manageable chronic condition. This development significantly improved both life expectancy and quality of life for millions of individuals worldwide.

Per the IDF, Bangladesh ranks among the top ten countries with the highest prevalence, with 13.9 million cases in 2024, projected to reach 23.1 million by 2050. High rates of undiagnosed and uncontrolled diabetes persist; three in five individuals (60%) with diabetes in Bangladesh are unaware of their condition, according to a study published in PLOS Global Public Health (2022), which is a much higher rate than the global average. Notably, a study recently published in Scientific Reports (2024) reports that in Bangladesh about one in four (24.3%) individuals with Type 2 diabetes (T2D) fall within a healthy weight range–an indication of “lean diabetes.” Lean diabetes is particularly common among individuals of South Asian ancestry, as discussed in a review published in Diabetology & Metabolic Syndrome (2025).

Through this study, we aim to understand the genetic and multi-omic signatures that contribute to the early onset of diabetes, as well as the differences between lean diabetes and non-lean diabetes to help improve diagnostic accuracy, inform tailored therapeutic strategies, and guide appropriate public health interventions in Bangladesh and other regions that share similar biological or demographic characteristics.

We were initially introduced to icddr,b through a Variant Bio team member who was previously a research fellow there, and recommended icddr,b as a fantastic potential partner. As a next step, my colleagues Prathap Kasina and Casey Johanns first visited Dhaka last year to meet with Dr. Aliya Naheed as well as the directors of the hospitals that were proposed by Dr. Aliya to be the most suitable study sites, where the research is being conducted. Casey then returned with two additional team members from Variant Bio, Dr. Melissa Hendershott and myself, to train a large group of 30 members–including physicians, nurses, phlebotomists, lab technicians, co-investigators, and several other physicians of other research teams for capacity building on using various medical apparatuses. We spent the week covering how to use these medical devices to measure key health parameters and the process of participant identification and recruitment, sample handling, and administering questionnaires to participants. This trip also gave us a chance to assess logistics on the ground and collaboratively tackle challenges before the project officially launched.

Next, Casey Johanns and I joined the icddr,b study team in Dhaka to lead the pre-launch setup at the study sites, including refresher training on the use of essential medical equipment for measuring health parameters and sample workflow. As part of our engagement, we also met with Dr. Faria Afsana, President, and Dr. Shahjada Selim, President-elect of the Bangladesh Endocrine Society in Dhaka, to introduce the project and identify diabetic community stakeholders and potential local beneficiaries and results return mechanisms following completion of the research.

Our follow-up visit earlier this year focused on supporting the launch of the study at both hospitals and ensuring full adherence to the research protocol. During this visit, we worked closely with the project teams to strengthen implementation workflows and address site-specific operational challenges. We provided hands-on support throughout the recruitment process, data collection, and sample handling and transfer.

Although this study centers on metabolic health and diabetes–areas where balanced nutrition is essential–I have to confess that the food in Dhaka was hard to resist for a spice lover like me. In addition to traditional curry dishes, I also got to try chinigura rice for the first time, and its rich, fragrant aroma had me wanting more even when I was already full.

After many months of hard work and travel, we were thrilled to have launched this study at two hospitals in Dhaka earlier this year. This milestone marks the first step in a project that holds great promise for understanding lean diabetes and metabolic health in Bangladesh and beyond. I am honored to work alongside leading Bangladeshi scientists and Novo Nordisk to address a condition that affects so many people around the world. Furthermore, I am confident that this research will uncover important findings about diabetes and inspire other scientists to follow Variant Bio’s approach — focusing on partnering with underrepresented populations to maximize discovery and advance novel treatments for diseases both in Bangladesh and globally.

Bangla translation:

টাইপ ২ ডায়াবেটিস গবেষণার মাধ্যমে দক্ষিণ এশিয়ায় নতুন ওষুধ আবিষ্কারের পথ উন্মোচিত হচ্ছে

সাম্প্রতিক সময়ে, ভ্যারিয়েন্ট বায়ো-র সহযোগী দলের সদস্যরা নভো নরডিস্ক-এর যৌথ উদ্যোগের অংশ হিসেবে একাধিক নতুন গবেষণা কার্যক্রম শুরু করার জন্য বিশ্বের বিভিন্ন অঞ্চলে ভ্রমণ করছেন। এই যৌথ উদ্যোগের ফলশ্রুতিতে গত ছয় মাসে ফ্রেঞ্চ পলিনেশিয়া, সামোয়া এবং নিউজিল্যান্ডের আওতেয়ারোয়াতে গবেষণা শুরু হয়েছে।

বাংলাদেশে ভ্যারিয়েন্ট বায়ো ও নভো নরডিস্ক-এর যৌথ উদ্যোগে আন্তর্জাতিক উদরাময় গবেষণা কেন্দ্র, বাংলাদেশ- আইসিডিডিআর, বি-র পরিচালনায় লিন টাইপ ২ ডায়াবেটিস বিষয়ক গবেষণার অংশ হতে পেরে আমি সত্যিই আনন্দিত। ড. আলিয়া নাহিদের সুযোগ্য নেতৃত্বে ঢাকায় একটি সম্পূর্ণ বাংলাদেশি গবেষকের দল দ্বারা এই প্রকল্পটি পরিচালিত হচ্ছে যাদের মধ্যে আছেন চিকিৎসক, ফ্লেবোটোমিস্ট (প্রশিক্ষিত রক্ত সংগ্রহকারী), নার্স, সহ-গবেষক এবং পরিসংখ্যানবিদ। প্রকল্পটি আইসিডিডিআর, বি-র নৈতিকতা পর্যালোচনা কমিটি (ইআরসি) অনুমোদন করেছে।

গতবছর, প্রশান্ত মহাসাগরের ওপারে সিয়াটেল থেকে দক্ষিণ এশিয়ায় আসাটা আমার এ যাবৎকালের দীর্ঘতম যাত্রাগুলোর একটি। তবে আশ্চর্যজনকভাবে, ঢাকার প্রাণবন্ত পরিবেশ, ব্যস্ত রাস্তাঘাট আর অবিরাম হর্নের শব্দ আমার জেটল্যাগকে নিমিষেই দূর করে দেয় এবং ১৪ ঘণ্টার সময়ের ব্যবধান সত্ত্বেও সারা সপ্তাহ ধরে আমি উদ্যমের সাথে কাজ করেছি।

সম্প্রতি, ঢাকার দুটি হাসপাতালে, গবেষণার জন্য অংশগ্রহণকারী অন্তর্ভুক্ত করার কার্যক্রম শুরু করা ছিল এই গবেষনার একটি গুরুত্বপূর্ণ মাইলফলক। দুটি হাসপাতালের মধ্যে রয়েছে একটি বড় সরকারি হাসপাতাল, যেখানে প্রতিদিন প্রায় ৭,০০০ রোগী আসেন, আর একটি বেসরকারি হাসপাতাল, যেখানে দৈনিক রোগীর সংখ্যা প্রায় ৫০০। তবে এই আনুষ্ঠানিক শুরুটা মোটেই এই গবেষণার প্রকৃত সূচনা ছিল না। এর পেছনে ছিল মাসের পর মাস প্রস্তুতি, স্থানীয় জনসম্পৃক্ততা, গবেষণার ক্ষেত্র নির্ধারণ এবং বিশেষ প্রশিক্ষণ কার্যক্রম, যাতে ঢাকার দলটি দক্ষতা, আত্মবিশ্বাস এবং গুরুত্বের সাথে গবেষণাটি পরিচালনা করতে পারে।

বিশ্বজুড়ে ডায়াবেটিসে আক্রান্ত রোগীর সংখ্যা ক্রমশঃ বৃদ্ধি পাচ্ছে । ২০২৪ সালে ডায়াবেটিসে আক্রান্ত রোগীর সংখ্যা ছিল ৫৮ কোটি ৯০ লক্ষ, যা ২০৫০ সালের মধ্যে ৮৫ কোটি ৩০ লক্ষে পৌঁছাবে বলে আশঙ্কা করা হচ্ছে । ২০২৫ সালের আন্তর্জাতিক ডায়াবেটিস ফেডারেশন (আইডিএফ)-এর ডায়াবেটিস অ্যাটলাস এর তথ্য অনুযায়ী, বিশ্বজুড়ে ২০ থেকে ৭৯ বছর বয়সী প্রাপ্তবয়স্কদের মধ্যে ১১.১% — অর্থাৎ প্রতি ১০ জনে ১ জন ডায়াবেটিসে আক্রান্ত, এবং তাঁদের মধ্যে প্রায় অর্ধেক (৪০%) মানুষ জানেনই না যে তাঁদের ডায়াবেটিস আছে। বিংশ শতাব্দীর শুরুতে ইনসুলিন আবিষ্কারের আগে ডায়াবেটিস, বিশেষ করে টাইপ ১ ডায়াবেটিস প্রায়ই মৃত্যুর কারণ হতো, এবং রোগীরা সাধারণত মাত্র কয়েক মাস থেকে কয়েক বছর পর্যন্ত বেঁচে থাকতেন। নভো নরডিস্ক-এর মতো কোম্পানিগুলোর উদ্যোগে ইনসুলিনের ব্যাপক উৎপাদন ও বৈশ্বিক সরবরাহের ফলে ডায়াবেটিস একটি তীব্র ও প্রাণঘাতী রোগ থেকে দীর্ঘমেয়াদে নিয়ন্ত্রণযোগ্য একটি রোগে পরিণত হয়েছে এবং বিশ্বজুড়ে লক্ষ লক্ষ মানুষের আয়ু এবং জীবনমান উল্লেখযোগ্যভাবে উন্নত করেছে।

আইডিএফ-এর তথ্য অনুযায়ী, ডায়াবেটিস প্রকোপের দিক থেকে বাংলাদেশ বিশ্বের শীর্ষ দশটি দেশের মধ্যে একটি। ২০২৪ সালে দেশে রোগীর সংখ্যা ছিল ১ কোটি ৩৯ লক্ষ, যা ২০৫০ সালে ২ কোটি ৩১ লক্ষ ছাড়িয়ে যাবে বলে অনুমান করা হচ্ছে। PLOS Global Public Health-এ প্রকাশিত এর ২০২২ সালের একটি গবেষণায় দেখা গেছে যে বাংলাদেশে প্রতি পাঁচ জন ডায়াবেটিসে আক্রান্ত ব্যক্তির মধ্যে তিন জন (৬০%) মানুষই জানেন না যে তাঁরা এই রোগে ভুগছেন, যা বৈশ্বিক গড়ের তুলনায় অনেক বেশি। আরও উল্লেখযোগ্য বিষয় হলো, ২০২৪ সালে Scientific Reports-এ প্রকাশিত একটি গবেষণায় দেখা গেছে যে বাংলাদেশে টাইপ ২ ডায়াবেটিস রোগীদের প্রতি চার জনের মধ্যে একজন (২৪.৩%) এর ওজন স্বাভাবিক — যাকে “লিন ডায়াবেটিস” বলা হয়। Diabetology & Metabolic Syndrome- এর ২০২৫ সালে প্রকাশিত এক পর্যালোচনায় বলা হয়েছে যে লিন ডায়াবেটিস দক্ষিণ এশীয় বংশোদ্ভূত মানুষদের মধ্যে বেশি দেখা যায়।

এই গবেষণার মাধ্যমে আমরা জানতে চাই, কোন্‌ কোন্‌ জিনগত ও মাল্টি-ওমিক বৈশিষ্ট্য প্রাথমিক পর্যায়ে ডায়াবেটিসে আক্রান্ত হওয়ার পেছনে ভূমিকা রাখে। পাশাপাশি, লিন ডায়াবেটিস ও নন-লিন ডায়াবেটিসের মধ্যে পার্থক্য বুঝতে চাই, যাতে রোগ সঠিকভাবে শনাক্ত করা যায়, রোগীর জন্য উপযুক্ত চিকিৎসা পরিকল্পনা করা যায়, এবং বাংলাদেশসহ একই ধরনের জৈবিক বা জনতাত্ত্বিক বৈশিষ্ট্য থাকা অঞ্চলে সঠিক জনস্বাস্থ্য কার্যক্রম পরিচালনা করা যায়।

আইসিডিডিআর, বি-র সাথে আমাদের পরিচয়টা ছিল একটু অন্য রকম। ভ্যারিয়েন্ট বায়ো-র একজন সদস্য বেশ কিছু বছর আগে আইসিডিডিআর, বি-তে রিসার্চ ফেলো হিসেবে ছিলেন এবং তিনিই আইসিডিডিআর, বি-কে এই গবেষণার জন্য উপযুক্ত মনে করেন । এরপর আমার সহকর্মী প্রতাপ কাসিনা এবং কেসি জোহ্যান্স গত বছর প্রথমবার ঢাকায় যান ড. আলিয়া নাহিদের সাথে দেখা করতে এবং তাঁর প্রস্তাবিত সেই হাসপাতালগুলোর পরিচালকদের সাথে পরিচিত হতে যেখানে বর্তমানে গবেষণাটি পরিচালিত হচ্ছে। কয়েক মাস পর কেসি, ভ্যারিয়েন্ট বায়ো-র ড. মেলিসা হেন্ডারশট এবং আমাকে নিয়ে ঢাকা ফিরে আসেন। সেবার আমরা দক্ষতা বৃদ্ধির উদ্দেশ্যে ৩০ জনের একটি বড় দলকে প্রশিক্ষণ দিয়েছিলাম, যেখানে চিকিৎসক, নার্স, ফ্লেবোটোমিস্ট, ল্যাব টেকনিশিয়ান, সহ-গবেষক এবং অন্যান্য গবেষণা দলের চিকিৎসকরাও অন্তর্ভুক্ত ছিলেন। আমরা পুরো সপ্তাহজুড়ে অংশগ্রহণকারীদের বিভিন্ন রোগনির্ণায়ক যন্ত্রপাতির ব্যবহার করে স্বাস্থ্যের বিভিন্ন পরীক্ষা করা থেকে শুরু করে অংশগ্রহণকারী শনাক্তকরণ, নমুনা সংগ্রহ, এবং অংশগ্রহণকারীদের কাছ থেকে প্রশ্নপত্র পূরণ করার প্রক্রিয়া সম্পর্কে প্রশিক্ষণ দিয়েছি। এই সফরের মাধ্যমে আমরা মাঠপর্যায়ের বাস্তবতাও যাচাই করতে পেরেছিলাম এবং গবেষণাটি আনুষ্ঠানিকভাবে শুরু হওয়ার আগেই বিভিন্ন চ্যালেঞ্জ সবাই মিলে একসাথে সমাধান করেছিলাম।

গবেষণা শুরু হওয়ার আগে ডিসেম্বর মাসে, কেসি জোহ্যান্স এবং আমি আবার ঢাকায় আইসিডিডিআর, বি-র গবেষণা দলের সঙ্গে যুক্ত হই, যেখানে আমরা রোগনির্ণায়ক যন্ত্রপাতির প্রয়োগ ও নমুনা সংগ্রহের কর্ম প্রবাহ নিয়ে পুনরায় হাতে-কলমে প্রশিক্ষণসহ বিভিন্ন প্রস্তুতিমূলক কাজ করি। এই সফরে আমরা আমাদের গবেষণা প্রকল্পটির ব্যাপারে অবহিত করার জন্য এবং গবেষণা শেষে ফলাফল কী ভাবে অংশগ্রহণকারী এবং স্থানীয় জনগোষ্ঠীর কাছে পৌছে দেওয়া হবে তা নিয়ে বিস্তারিতভাবে জানার জন্য বাংলাদেশ এন্ডোক্রাইন সোসাইটির সভাপতি ড. ফারিয়া আফসানা এবং নির্বাচিত সভাপতি ড. শাহজাদা সেলিমের সাথেও দেখা করেছিলাম ।

এই বছরের জানুয়ারিতে আমাদের পরবর্তী সফরের মূল লক্ষ্য ছিল দুটি হাসপাতালে গবেষণা শুরুর কাজে সহায়তা করা এবং গবেষণার নিয়মগুলো ঠিকভাবে মানা হচ্ছে কি না তা নিশ্চিত করা। গবেষণা দলের সাথে আমরা ঘনিষ্ঠভাবে কাজ করেছি, যাতে কাজের প্রক্রিয়াগুলো আরও উন্নত করা যায় এবং প্রতিটি গবেষণা দলের নির্দিষ্ট সমস্যাগুলো সমাধান করা যায়। এছাড়াও আমরা গবেষণায় অংশগ্রহণকারী অন্তর্ভুক্ত করা, তথ্য সংগ্রহ এবং নমুনা সংগ্রহ ও স্থানান্তরের পুরো প্রক্রিয়ায় গবেষণা দলকে সরাসরি সহায়তা করেছি।

এই গবেষণাটি যদিও ডায়াবেটিসকে কেন্দ্র করে, যেখানে সুষম খাবার গ্রহণ অত্যন্ত গুরুত্বপূর্ণ, একজন মশলাপ্রেমী হিসেবে আমি স্বীকার না করে পারছি না যে ঢাকার খাবারের লোভ সংবরণ করাটা সত্যিই কঠিন ছিল। মৌসুমি ও ঐতিহ্যবাহী খাবারের পাশাপাশি এই প্রথম চিনিগুড়া চালের ভাত খেলাম- পেট ভরা থাকা সত্ত্বেও এটির অপূর্ব ঘ্রাণে আরও খেতে মন চাইছিল।

অনেক মাসের কঠোর পরিশ্রম ও ভ্রমণের পর, এই বছরের শুরুতে ঢাকার দুটি হাসপাতালে এই গবেষণা শুরু করতে পেরে আমরা খুবই আনন্দিত। এই মাইলফলকটি একটি বিশাল গবেষণা কর্মসূচির প্রথম পদক্ষেপ, যা বাংলাদেশসহ বিশ্বজুড়ে লিন ডায়াবেটিস এবং বিপাকীয় স্বাস্থ্য বোঝার ক্ষেত্রে গুরুত্বপূর্ণ অবদান রাখবে বলে আমরা আশা করছি। আমি গর্বিত যে বাংলাদেশের শীর্ষস্থানীয় বিজ্ঞানী এবং নভো নরডিস্ক-এর সাথে এমন একটি রোগ নিয়ে কাজ করার সুযোগ পেয়েছি যা সারা বিশ্বের অনেক মানুষকে আক্রান্ত করে। আমি আশাবাদী যে এই গবেষণা ডায়াবেটিস সম্পর্কে গুরুত্বপূর্ণ তথ্য উন্মোচন করবে। এছাড়া অন্যান্য বিজ্ঞানীদেরও ভ্যারিয়েন্ট বায়ো-র পদ্ধতি অনুসরণ করে পিছিয়ে পড়া জনগোষ্ঠী- বিশেষ করে যারা এখনো গবেষণায় কম প্রতিনিধিত্ব পায়, তাদেরকে যুক্ত করে বৈজ্ঞানিক উদ্ভাবনকে এগিয়ে নিতে উৎসাহিত করবে যা বাংলাদেশ ও বিশ্বের অন্যান্য দেশে নতুন চিকিৎসা পদ্ধতির উন্নয়নে অবদান রাখবে।

Empowering Discovery Through a Type 2 Diabetes Study in South Asia was originally published in Variant Bio on Medium, where people are continuing the conversation by highlighting and responding to this story.

This week on BioTech Nation, a weekly NPR segment hosted by the former NASA scientist and engineer Dr. Moira Gunn, CEO Andrew Farnum and I discussed Variant Bio’s unique and ethically-minded approach to carrying out genomic research for drug discovery and development with underrepresented populations around the globe. Tune in to hear Dr. Gunn interview us on how compiling diverse genetic data and analyzing it with the aid of AI agents can help develop better drugs and diagnostics, and how, as a private company, we are sharing the benefits we reap with partner communities around the world.

Variant Bio’s CEO and Senior Director of Ethics Interviewed on NPR’s BioTech Nation Podcast was originally published in Variant Bio on Medium, where people are continuing the conversation by highlighting and responding to this story.

A few months ago, I wrote about a project that Variant Bio recently launched together with Novo Nordisk and Oceania University of Medicine in Samoa. This followed shortly after we announced the launching of a new project with Novo Nordisk and the Catholic Hospital Group of Lille focused on inflammatory and metabolic conditions in Tahiti. Now, I am thrilled to announce that we have kicked off recruitment for a third new project with Novo Nordisk, this time working with Cook Island communities living in Aotearoa New Zealand, in partnership with the University of Otago and Pukapuka Community Group in Auckland.

As detailed in an article highlighting our collaboration with Novo Nordisk in The New York Times last year, Aotearoa New Zealand is the first place that Variant Bio co-founders visited in order to propose partnering with Indigenous and underrepresented communities on a genomic research project. Over the past seven years, Variant Bio has steadily built a relationship of trust and reciprocity with Pacific partner communities in Aotearoa, as well as research collaborators at both the University of Otago and the Pukapuka Community Group. For this reason, our newest project in Auckland feels like a natural evolution of the work we did with the Pukapuka community there in 2023, which was also led by Professor Tony Merriman, a world-renowned gout researcher, Mr. Nuku Rapana, President of the Pukapuka Community Group, and Dr. Colin Beumelburg-Poyila, a Pacific medical doctor.

This time, for the larger project with Cook Island communities in Auckland, the study team also includes Temoe Neuffer, a Variant Bio Standley Fellow. Temoe is a recent graduate of Ōtākou Whakaihu Waka, the University of Otago. Originally from Tahiti and Raiatea in Mā’ohi Nui, French Polynesia, she is passionate about the genetic diversity of Pacific populations and the ethically grounded application of genomics in health and population research. Since beginning her Fellowship with us, Temoe has gained hands-on experience training on the use of medical devices needed for the study, administering informed consent, health questionnaires, and phenotypic measurements, and many other aspects of study implementation.

As is the case for the study we are currently carrying out in Samoa, this project also includes a governance committee (Kaitiaki Group) made up of Cook Island community leaders. The Kaitiaki Group will share updates on the study locally and receive feedback on and advise on matters such as sample and data processing throughout the lifespan of the project. Working with the Kaitiaki Group aims to ensure that community voices are included throughout the research process, and the group’s role is clearly outlined in the study’s ethics protocol, participant information sheet, and research collaboration agreement between Variant Bio and the University of Otago.

Before launching the project in November of last year, my colleague Dr. Olivia Gray and I trained the study team together in Auckland. While she was there, Olivia also presented overall results from the 2023 study with the Pukapuka community. This presentation was an extension of the results we already returned in 2024, and focused on the recent analysis of genetic data collected during the study. Specifically, she shared with the community how the measurements and traits collected during the study could be analyzed along with genetic data to deepen our understanding of the links between genes and health. She highlighted unique features of genetic variation in the study cohort including a protective genetic variant in a gene known as Apolipoprotein-E (APOE). This genetic variant was found at unusually high frequency in the community compared to other groups — both within Polynesia and globally — potentially helping to explain historically low cholesterol in Pukapukan people first documented in the 1960s.

The presentation was followed by enthusiastic discussion, questions, and suggestions from community members on how to interpret the data and what else to examine as analysis continues. In addition to sharing new findings, this discussion highlighted the success of our first collaborative study, the value of community insight and input on analysis, and the great potential of our new research project with Cook Island communities in partnership with Novo Nordisk, the University of Otago, and the Pukapuka Community Group.

Kicking Off a New Study on Metabolic Health with Cook Island Communities in Aotearoa New Zealand was originally published in Variant Bio on Medium, where people are continuing the conversation by highlighting and responding to this story.

Long before a journal article appears in print, it undergoes extensive planning, revision, and collaboration. From the time my colleagues in South Africa and I first met in person in September 2024 to workshop our paper, to the moment the final manuscript was published in Nature Communications last week, we have engaged in many hours of discussion and drafting together.

Hence, we are very pleased that our paper, “From urban NPOs to rural knowledge networks: applying benefit-sharing models to African genomics research,” is now available to the public, in a fully open-access format. In our article, we discuss benefit-sharing initiatives instituted as part of human genomics research projects carried out in both semi-rural and urban settings in South Africa. We explore lessons learned from applying different approaches to benefit sharing, as well as recommendations for ways to enhance success for future initiatives. Ultimately, we advocate for the adoption of flexible benefit-sharing models that take into consideration community representation and engagement, benefit management mechanisms, and long-term sustainability.

Writing this manuscript has been a highly collaborative process. The majority of the authors are African study team members, including community engagement officers from three different study sites, who led the process of community engagement and benefit sharing for genomic research projects in South Africa.

In the paper, we specifically explore the implementation process of financial benefit-sharing initiatives for two human genomic research studies in South Africa: (1) a study arising out of the AWI-Gen Collaborative Centre as part of the Human Heredity and Health in Africa (H3Africa) Consortium and referred to as the Southern African Blood Regulatory (SABR) resource, and (2) a study with the South African arm of the African Research on Kidney Disease (ARK) Consortium. For each of these studies, as part of its unique benefit-sharing programs, Variant Bio has distributed 10% of the project budget to community-identified organizations supporting the groups participating in research.

Finally, as we mention in the acknowledgments section, our paper is dedicated to the memory of Jackson Mabasa, a beloved public engagement officer who touched so many lives in Soweto. Tragically, Jackson died before the paper went to press. This work could not have happened without him. The authors would like to thank, above all, the South African communities of Mpumalanga (Agincourt), Gauteng (Soweto), and Limpopo (DIMAMO) who shared their genomic and health data with researchers. We would also like to thank all the field workers, project coordinators, and researchers who contributed to making these collaborative studies a success. The outcomes of the research will be published and the data made available to the broad research community.

Collaborating with Research Partners in South Africa on a Paper Published in Nature Communications was originally published in Variant Bio on Medium, where people are continuing the conversation by highlighting and responding to this story.