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The complex promise of newborn screening
1Department of Health Policy, Management and Evaluation, University of Toronto, Toronto M5T 3M6 Canada. fiona.miller@utoronto.ca
Insights
Newborn screening (NBS) offers a promising way to reduce infant mortality and morbidity from rare genetic disorders. Implementing effective NBS programs in India requires careful consideration of clinical criteria and ethical values.
Area of Science:
- Public Health
- Preventive Medicine
- Genetics
Background:
- Newborn screening (NBS) has been a practice in preventive medicine since the 1960s.
- Technological advancements have increased attention on NBS.
- India faces challenges in expanding its infant screening programs.
Purpose of the Study:
- To explore the potential of NBS in reducing infant mortality and morbidity.
- To address the challenges in prioritizing and coordinating NBS implementation in India.
- To examine the role of decision-making frameworks and public health ethics in NBS policy development.
Main Methods:
- Review of existing NBS practices and technological capacities.
- Analysis of clinical criteria and values conflicts in NBS decision-making.
- Application of public health ethics frameworks.
Main Results:
- NBS holds significant promise for preventing infant mortality and morbidity from rare genetic disorders.
- Effective NBS implementation necessitates frameworks addressing both clinical and ethical considerations.
- Public health ethics frameworks can guide policy development in India and inform international NBS debates.
Conclusions:
- Developing robust NBS programs is crucial for public health in emerging economies like India.
- Decision-making frameworks are essential for balancing the benefits and challenges of NBS expansion.
- Ethical considerations are paramount in shaping effective and equitable NBS policies worldwide.
Abstract:
Newborn screening has been practised as a form of preventive medicine since the 1960s, and has attracted increased attention in recent years as technological capacities expand. Like other emerging economies, India faces pressure to expand infant screening, though developments have been halting. The promise of newborn screening is the reduction of infant mortality and morbidity from a host of rare, typically genetic, disorders. Deciding what priority should be placed on the realisation of this promise, together with the practical challenge of coordinating the screening enterprise, requires the use of decision making frameworks that address both clinical criteria and values conflicts. Frameworks for public health ethics can aid sound policy development in India, and help to inform the larger international debate about the expansion and benefits of NBS.
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