ExclusiveFrom Kuantan to ‘Oscars of science’: top Malaysian scientist is constantly adapting

For Dr Thein Swee Lay, the only Malaysian scientist to have won the Breakthrough Prize, cracking a code in gene therapy was easier than hunting down an authentic version of her hometown popiah (spring rolls) in the US, where she has been based for years. “I have not come across a Malaysian restaurant that sells good popiah. I miss it,” Thein told This Week in Asia in an exclusive interview, fondly reminiscing about her childhood in Malaysia’s coastal town of Kuantan. The seventh of nine children, Thein grew up in a large family that moved frequently across then Malaya, following her father’s civil service postings. The constant relocation taught her to adapt to ever-changing circumstances – a quality that would serve her well throughout her career. Now 74, she works at the National Institutes of Health campus in Bethesda and has lived in Washington since 2015. In April, she won one of the 2026 Breakthrough Prizes, dubbed the “Oscars of science”, for work that helped turn a decades-old mystery in blood disorders into a landmark gene-editing discovery. As chief of the Sickle Cell Branch and senior investigator at the US National Heart, Lung and Blood Institute, she shares the life sciences award with Harvard Medical School’s Dr Stuart Orkin. Together, their research helped turn sickle cell disease and beta-thalassaemia from incurable conditions into treatable ones through gene-editing therapy. Her recognition comes as Malaysia continues to position itself as a science and innovation economy. Last year, it ranked 34th in the 2025 Global Innovation Index. Thein is not alone in raising Malaysia’s scientific profile. Biochemist Dr Ravigadevi Sambanthamurthi who established the country’s Advanced Biotechnology and Breeding Centre in 2000 and led the first facility to decode the oil palm genome, was elected a Fellow of the Royal Society last year. ‘Very humbling’ Thein’s initial reaction to winning one of science’s most prestigious accolades was disbelief. “A recognition of this magnitude is really very humbling,” she recalled, adding that she mistook calls about the prize for scams at first because she did not recognise the phone numbers. She credits her homemaker mother with instilling a love of learning in her. “I certainly did not have a tiger mum,” she said, referring to the stereotype of results-obsessed Asian mothers. “She left us to do what we wanted to do.” Though drawn to biology, Thein followed her family’s advice to study medicine, recognising it as a path that could still accommodate her scientific passions. In pre-independence Malaya, a UK degree was considered the gold standard for career advancement. Thein excelled academically, receiving a scholarship to study medicine at the University of Malaya before she left for Britain to pursue postgraduate training. Haematology, the study of blood and its disorders, appealed to Thein as it allowed her to work with patients while conducting laboratory research. This ability to switch between the field and research served her well over the next decades. Her mentor, David Weatherall, tasked her with finding out why some patients with severe beta-thalassaemia – a hereditary disorder in which the body produces insufficient beta-globin, a key component of the haemoglobin that enables red blood cells to carry oxygen – did not require blood transfusions even though their genes suggested they should. “Coming from a clinical world to studying, having to plan my research, I sat and stared at my computer. I didn’t know what to do,” she said, describing it as one of the greatest challenges of her career. Undeterred by the limitations of available technology, she set about collecting patient samples and convincing herself that she would achieve a breakthrough. “I collected quite a large number, because I knew the time would come when technology would help me,” she said. Her persistence paid off. She found that patients with milder disease shared a telling commonality: they continued producing fetal haemoglobin, a form normally synthesised before birth. She continued to work on the problem even after moving to King’s College London in the 2000s. There, armed with a larger sample bank and more advanced genetic tools, her team identified key genetic regions and the key regulator for fetal haemoglobin production, B-cell lymphoma/leukaemia 11A (BCL11A), in 2007. This breakthrough paved the way for therapies targeting both sickle cell disease and beta-thalassaemia. The years spent on this work were long and unglamorous, conducted alongside other clinical duties and research. “People think it is so fantastic to work with me because they will get a breakthrough. I tell them, listen, it is all about hard work,” she said. “Just enjoy your work. The rewards will come later.” New frontiers Thein published her BCL11A findings research in 2007 and gene-editing therapy based on the research received regulatory approval in 2023. But a problem persists to this day: the treatment is largely inaccessible to the masses. Gene-editing therapy costs between US$2 million and US$3 million and can take up to a year to complete – a heavy undertaking for patient and doctor alike. It requires extracting a patient’s stem cells, manipulating them in a special facility and subjecting the patient to intensive chemotherapy to prepare the body for the edited cells. “For this reason, I realised it is not practical because we have millions of patients with sickle cell and thalassaemia globally,” Thein said. The latest Malaysia Thalassaemia Registry annual report recorded 10,776 registered thalassaemia patients from 2007 to 2023, of whom 8,282 were living. Sabah had the highest cumulative number, with 2,489 cases, or 23.1 per cent of the national total. Thein’s research focus has since shifted towards developing drugs that are easier to administer and more accessible. She believes progress will require both scientific advances and political commitment in equal measure. “Even affordable and the best treatments fail patients if the systems to deliver them don’t exist,” she said. “We need sustained political will, genuine international investment in health infrastructure, and a global commitment to equity in access.” Thein did not elaborate on any timeline she expected regarding accessibility of the treatment. Reflecting on a career defined by patience and incremental progress, she said a true scientist must be willing to recalibrate, step back and persevere in the absence of breakthroughs. Genetics, for me, is truly humbling Thein Swee Lay, Breakthrough Prize winner Having worked in this field for years, she said one undeniable takeaway was the privilege of seeing technology advance, especially in gene editing. “Genetics, for me, is truly humbling,” Thein said. The prize is also a reflection of how far a child from modest circumstances in Malaysia can go. Despite spending decades abroad, she remains Malaysian at heart, returning regularly to visit her siblings. For young bloods hoping to follow her path, her counsel is straightforward: do not wait for certainty and keep going when the answer is not yet visible. “Use setbacks as opportunities to learn and try again. Do not let where you come from become the ceiling of what you can achieve.”

.css-1c6uqr6{color:inherit;font-weight:inherit;font-size:inherit;font-family:inherit;line-height:inherit;overflow-wrap:break-word;}Breakthrough Prize winner Thein Swee Lay’s research has helped turn sickle cell disease and beta-thalassaemia into treatable conditions

Breakthrough Prize winner Thein Swee Lay’s research has helped turn sickle cell disease and beta-thalassaemia into treatable conditions