To facilitate greater awareness of thalassemia, a hereditary hemoglobinopathy, BGI Genomics recently released its State of Thalassemia Awareness Report. The report assesses the level of knowledge and attitudes related to the associated health risks, thalassemia carrier screening, and genetic counselling for carriers. The report draws information from a survey of 1,847 female respondents from six countries with high thalassemia prevalence: Azerbaijan, China, Indonesia, Kuwait, Saudi Arabia, and Thailand.
94.1% of Kuwaiti women considered screening after learning about associated thalassemia health risks and costs which is higher than the global average of 84.5%. If both partners are thalassemia carriers, 38.1% of Kuwaiti women can persuade their partners to seek genetic counselling and consider preimplantation genetic diagnosis (PGD) which is lower than the global average of 50.9%.
Survey findings highlighted the urgent need to improve awareness, address barriers, and enhance access to screening:
- Awareness: 70.5% of women did not know much about thalassemia symptoms and the associated health risks, with another 14.4% indicating they had never heard about thalassemia.
- Accessibility: Hospitals or agencies nearby that provide screening services (43.1%), cost of screening services (38.1%), and before getting married or having children (35.3%) are the top reasons that affect the willingness to undergo thalassemia screening.
- Genetic counselling: If both partners are thalassemia carriers, 50.8% of women can persuade their partners to seek genetic counselling and consider PGD. If women have obtained information about thalassemia from health awareness programmes, this percentage rises to 59.5%.
Dr Zhiyu Peng, BGI Genomics deputy general manager, noted: “This survey shows that enhancing awareness and accessibility are an important first step in thalassemia control programmes. Region-specific screening and treatment programmes, customized to align with local healthcare resources and cultural values, are also vital to identify thalassemia patients and carriers.”
Dr Androulla Eleftheriou, Thalassaemia International Federation executive director, commented: “Enhancing awareness is a crucial first step in promoting individual behaviour changes and policy reforms, ultimately leading to improved prevention, control, and management of thalassemia. Screening services – a key component of any effective national control programme – needs to consider cultural and socio-economic backgrounds. We welcome BGI Genomics efforts and reaffirm our commitment to further expanding thalassemia awareness on a global scale.”
- Read the full BGI Genomics State of Thalassemia Awareness Report 2023
here: https://cutt.ly/PwYL7HYI
