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Published on: August 25, 2014
Past as Prologue: Predicting Potential Psychosocial-Ethical Burdens of Positive Newborn Screens as Conditions
Lynn W Bush1,2,3, Harvey L Levy1,3
1Department of Medicine, Division of Genetics and Genomics, Boston Children's Hospital, Boston, MA 02115, USA.
Insights
Newborn screening (NBS) positive findings present psychosocial-ethical challenges for parents. Further research is crucial for understanding implications and improving support for families navigating uncertain diagnoses.
Area of Science:
- Bioethics
- Developmental Psychology
- Public Health
Background:
- Newborn screening (NBS) has evolved, intersecting with bioethics and developmental psychology.
- Positive NBS findings, including false positives and incidental findings, pose complex psychosocial-ethical challenges for parents.
- The diagnostic odyssey is influenced by variable phenotypes, age of onset, and uncertain prognoses.
Purpose of the Study:
- To explore psychosocial-ethical challenges associated with positive NBS findings.
- To examine implications of positive NBS results on parental attachment and the diagnostic odyssey.
- To inform policy development in public health and medicine regarding NBS communication and support.
Main Methods:
- Review of bioethical and developmental psychology literature.
- Analysis of challenges related to positive NBS findings (true, false, secondary, incidental).
- Reflection on navigating diagnostic uncertainty and its psychological impact.
Main Results:
- Positive NBS findings can lead to significant psychosocial-ethical challenges for parents.
- Variable phenotypes, onset age, and uncertain prognoses complicate the interpretation and management of NBS results.
- Current support systems and research are insufficient to address the full spectrum of parental distress.
Conclusions:
- Substantive empirical research, including long-term follow-up and innovative methodologies, is needed.
- Prenatal assessment of uncertainty tolerance and improved evaluation of perinatal psychological distress are recommended.
- Developing and studying mitigation strategies based on NBS lessons learned is essential for reducing family burdens and improving communication.
Abstract:
We look to the past as prologue for guidance in predicting and circumventing potential psychosocial-ethical challenges, including those that may influence the attachment process for some parents. We consider the evolution of bioethics and developmental psychology as they intersect with newborn screening while exploring potential implications of positive findings, be they false positives, true positives, or secondary as well as incidental findings. We reflect on navigating the complex landscape that may be significantly impacted by variable phenotypes, the age of onset, and uncertain prognoses, mindful of the diagnostic odyssey continuum. We explore select facets of ethical and psychological challenges encountered with positive newborn screening findings by highlighting enduring debates to improve the policy process in public health and medicine. We believe substantive empirical research is needed, including long-term follow-up, routine prenatal assessment of tolerance for uncertainties, and especially innovative methodologies to better evaluate potential psychological distress that may be present in some at-risk individuals during the perinatal period preceding and following reports of positive findings. Mitigation strategies building on lessons learned from NBS and clinical follow-up should be implemented and studied. We conclude by pondering why we remain far afield from providing these services. Research directed towards understanding the implications of positive NBS findings will further reduce the burdens on families and care providers alike and should lead to improved communication.
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