The benefits of genomic science might seem elusive for individuals living with genetic conditions such as transfusion-dependent-thalassemia (TDT) in low-middle-income countries (LMICs) such as Indonesia. While there is ample excitement for gene therapies for TDT (CASGEVY, which received conditional marketing authorization from the UK Medicines and Healthcare Products Regulatory Agency in November 2023), anticipated costs of ~$2 million per patient subdue that excitement. Reproductive decisions are particularly challenging for individuals with TDT and are likely to remain so notwithstanding the emerging gene therapies that ultimately could prove transformative. An improved understanding of the reproductive decision-making process of pregnant persons with TDT in LMICs is needed to improve culturally relevant competencies for both nurses and genetic counselors. To gain a better understanding of reproductive decision-making by pregnant persons with TDT, we performed semi-structured interviews with 11 participants recruited from three hospitals in West Java, Indonesia in Summer 2023. Inductive content analysis revealed five themes: 1) imbalanced reproductive decision-making; 2) family’s concerns regarding high risk of thalassemia pregnancy; 3) instincts to procreate; 4) pregnancy as a blessing; 5) awareness of socio-individual determinants of health. Our research highlights challenges faced by individuals with TDT regarding exercise of their reproductive rights, finding such decisions often being influenced by religious beliefs and culture and also finding tensions involving autonomy and social responsibility shaping the reproductive decision-making process. Finally, we outline how these findings can inform future efforts needed to promote equity in genomic nursing and gene therapies for individuals with TDT globally.
Authors: Karolus Wangi, Pennsylvania State University; Jennifer Wagner, Pennsylvania State University; Barbara Birriel, Pennsylvania State University; Colin Smith, Pennsylvania State University; Henri Setiawan, STIKes Muhammadiyah Ciamis
