Receiving results of uncertain clinical relevance from population genetic screening: systematic review & meta-synthesis of qualitative research. ![]() Johnson F, Ulph F, MacLeod R, Southern K. The Common-Sense Model of Self-Regulation (CSM): a dynamic framework for understanding illness self-management. Psychological and ethical challenges of introducing whole genome sequencing into routine newborn screening: lessons learned from existing newborn screening. Uncertainties experienced by parents of children diagnosed with severe combined immunodeficiency through newborn screening. Raspa M, Kutsa O, Andrews SM, Gwaltney AY, Mallonee E, Creamer A, et al. Their paper highlights that although identifying babies with SCID appears to have significant physical benefits, parents can experience a range of psychological reactions, which warrant more careful consideration about how we prepare and support parents to receive a diagnosis via NBS. A key message from this work is that, in line with the World Health Organisation’s definition of health, it is important to view health more broadly as the physical, mental and social well-being of a person. ![]() explored the experience of parents who receive a diagnosis of SCID via newborn screening. ![]() In this issue of the European Society of Human Genetics Raspa et al. A common narrative about the benefits of NBS is that it removes the ‘diagnostic odyssey’ for families and this is being amplified in the current debates about using whole genome sequencing in this screening programme. Newborn bloodspot screening (NBS) programmes are seen as one of the greatest advances in public health and undoubtedly do improve the physical health outcomes of many in a way that should be highly valued.
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