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Definition of the problem <p>Genomic newborn screening (gNBS) is increasingly being discussed internationally and currently tested in initial research projects. While gNBS offers the potential to detect numerous genetic disorders at an early stage, it also presents ethical and psychological challenges. This study explores parental decision-making autonomy in the context of gNBS.</p> Main points <p>Initially, ethical and psychological dimensions of decision-making are examined. One key ethical challenge is the need for comprehensive and understandable information, given the complexity of the topic. However, it is equally important that parents fully grasp the implications of their decision for or against screening. A&#xa0;particular challenge lies in the fact that they are deciding on behalf of their child, which will significantly impact the child’s future well-being. Psychological factors, such as individual personality traits, trust in the physician, and emotional responses can also influence decision-making. This work refers to the findings of a&#xa0;focus group discussion in which the perspectives and needs of parents, physicians, and patient representatives regarding decision-making in gNBS were explored. Participants emphasized the importance of early, prenatal education and structural support in the consent process. Findings indicate that the expertise of those providing information and the consideration of different care contexts are crucial to ensuring informed and autonomous parental decision-making.</p> Conclusion <p>Empirical findings and theoretical considerations lead to practical recommendations: information should be provided clearly, comprehensively, and as early as possible. A&#xa0;transparent information process, alongside interactive and adaptive decision aids and training for healthcare professionals, is essential to support parents in their decision-making. However, parental autonomy exists in a&#xa0;delicate balance with the representative exercise of the child’s autonomy rights. While parents should be empowered to make an informed and independent decision, it is crucial to ensure that this decision serves the best interests of the child, which must take precedence over parental preferences.</p>

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Die elterliche Autonomie bei der Entscheidungsfindung über ein genomisches Neugeborenen-Screening – psychosoziale und ethische Aspekte

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2025年9月8日

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  • Elena Sophia Doll,
  • Julia Mahal,
  • Carlotta Julia Mayer,
  • Seraina Petra Lerch,
  • Beate Ditzen

摘要

Definition of the problem

Genomic newborn screening (gNBS) is increasingly being discussed internationally and currently tested in initial research projects. While gNBS offers the potential to detect numerous genetic disorders at an early stage, it also presents ethical and psychological challenges. This study explores parental decision-making autonomy in the context of gNBS.

Main points

Initially, ethical and psychological dimensions of decision-making are examined. One key ethical challenge is the need for comprehensive and understandable information, given the complexity of the topic. However, it is equally important that parents fully grasp the implications of their decision for or against screening. A particular challenge lies in the fact that they are deciding on behalf of their child, which will significantly impact the child’s future well-being. Psychological factors, such as individual personality traits, trust in the physician, and emotional responses can also influence decision-making. This work refers to the findings of a focus group discussion in which the perspectives and needs of parents, physicians, and patient representatives regarding decision-making in gNBS were explored. Participants emphasized the importance of early, prenatal education and structural support in the consent process. Findings indicate that the expertise of those providing information and the consideration of different care contexts are crucial to ensuring informed and autonomous parental decision-making.

Conclusion

Empirical findings and theoretical considerations lead to practical recommendations: information should be provided clearly, comprehensively, and as early as possible. A transparent information process, alongside interactive and adaptive decision aids and training for healthcare professionals, is essential to support parents in their decision-making. However, parental autonomy exists in a delicate balance with the representative exercise of the child’s autonomy rights. While parents should be empowered to make an informed and independent decision, it is crucial to ensure that this decision serves the best interests of the child, which must take precedence over parental preferences.