World Congress Bioethics edition:12 location:Mexico date:25-28 Juni 2014
Background: With the expansion of prenatal diagnostic options, we have been challenged to redefine our understanding of parental autonomy and responsibility. Parental choices are publicly analyzed,approved or disapproved; some argue that parents have the moral obligation to enhance the genetic
makeup of their children, others consider this goes beyond normal parental duties. The public and scholarly attention goes to the social anxiety around the limits of procreative freedom and the increasing tension between individual rights and community interests.
Objectives: Our study focused on the experiences of healthcare professionals (HCPs) and families
regarding current counseling practices. On the one hand our objective was to get an insight in HCPs\’
views on parental autonomy and responsibility and to see whether/ to what extent they influence
parental choice in concrete counseling situations; on the other hand we explored parents’ decision-making, to see if they experience limitations in their choices and to assess their needs.
Methods: In-depth, semi-structured, face-to-face interviews (n=41) were conducted with HCPs; a grounded theory approach was used to analyze the data. Besides 260 questionnaires were completed online by parents with a recent experience of prenatal diagnosis; we used Qualtrics software for
handling the questionnaire.
Results: HCPs expressed a strong striving for non-directivity and commitment to respect parental autonomy and choice. However, they also formulated dilemmatic situations where they experienced
tension between this ideal and the challenges of the practice. The great majority of parents were satisfied with counseling, some desired more emotional support and active implication of HCPs in their decision-making. Both groups suggested concrete ways of enhancing decision-making support.
Conclusion: Given that prenatal diagnostic technologies are rapidly evolving, ongoing academic and societal debate are critical. HCPs’ and parents’ views represent a good starting point in this regard