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Introduction
The rapid advancement of genetic technologies, particularly heritable genome editing (HGE), necessitates careful consideration of ethical and societal implications. HGE, the modification of genes passed to future generations, raises complex questions about safety, effectiveness, and ethical permissibility. While a majority of countries prohibit HGE, ongoing scientific and societal dialogue necessitates robust public and stakeholder engagement to determine its responsible implementation. Preimplantation genetic testing (PGT) currently offers embryo selection to prevent genetic conditions, but limitations remain. CRISPR-Cas technology offers potential solutions, but its application in HGE raises further ethical dilemmas. The World Health Organization (WHO) emphasizes the need for ethical values and principles in guiding HGE. Healthcare professionals' worldviews significantly influence counseling, potentially creating dilemmas related to non-directive counseling. Existing research highlights the infrequent explicit discussion of values and beliefs in prenatal screening counseling, despite their influence on decision-making. This study focuses on religiously-affiliated midwife counselors in the Netherlands to understand how their worldviews affect their counseling practices regarding prenatal anomaly screening and their perspectives on HGE. Given the increasing role of midwives in preconception care and carrier screening, understanding their viewpoints is crucial. The study aims to explore how religious midwife counselors deal with their religious worldviews during counseling and how their values influence their perspectives on HGE.
Literature Review
The literature review examines the ethical considerations surrounding HGE, including the ongoing debate on its permissibility and the need for public engagement. Existing studies highlight the influence of healthcare professionals' worldviews on their counseling practices and decision-making, emphasizing the importance of non-directive counseling. However, little research exists on the perspectives of religiously-affiliated midwife counselors regarding new reproductive technologies like HGE. This gap underscores the importance of understanding how religious beliefs and values shape counseling practices and perspectives on HGE.
Methodology
This qualitative study employed semi-structured interviews with 11 Dutch midwife counselors (8 Christian, 3 Muslim) who provide prenatal anomaly screening. Participants were recruited using purposive and snowball sampling. Interviews explored their religious worldviews, counseling practices, perspectives on HGE, and ideas on responsible HGE implementation. The interview guide covered topics like religious worldview, counseling practices for prenatal anomaly screening, views on HGE, responsible implementation of HGE, and required counseling skills for HGE. The interviews, lasting approximately 60 minutes, were audio-recorded, transcribed verbatim, and analyzed using ATLAS.ti software. Thematic analysis was performed, involving independent coding by two researchers and feedback from a third. The WHO's ethical values for human genome editing were used for comparison.
Key Findings
The study identified two key themes: 'a search for role identity as a healthcare counselor' and 'concerns about the application of HGE'. **Theme 1: Search for role identity:** Counselors navigated the tension between their professional roles and religious beliefs, particularly regarding decisions involving termination of pregnancy. They emphasized respect for client autonomy and informed decision-making but also struggled with reconciling this with their beliefs about the sanctity of life, the moment when life begins, and the meaning of suffering. While many strived for non-directiveness, some acknowledged internal conflict and the difficulty of remaining entirely non-verbal in their interactions. Underlying beliefs about God as the creator, the beginning of life, and human suffering significantly impacted their interpretation of values. **Theme 2: Concerns about the application of HGE:** Most counselors expressed hesitancy towards HGE despite recognizing its potential to prevent severe hereditary diseases. Key concerns included 'slippery slopes' related to defining 'serious' diseases, societal pressure to eliminate imperfections, and the blurring of lines between treatment, prevention, and enhancement. Their religious beliefs again influenced their perspectives, impacting their interpretation of values such as the sanctity of life and the role of human suffering. Some strongly opposed HGE as interference with God's creation. Others expressed a more nuanced position, with some support for HGE to prevent severe diseases before the point they considered life to begin, while others felt the application of HGE to be an exceeding of human authority. The study also revealed concerns about increased responsibilities for counselors if HGE became more widely available, highlighting the need for additional training in advanced counseling skills and knowledge about HGE and diverse religious perspectives.
Discussion
The findings highlight the interplay between professional roles, religious beliefs, and ethical considerations surrounding reproductive technologies. Counselors' search for role identity reflects the challenges of integrating personal values into professional practice while upholding ethical guidelines, such as non-directive counseling. The concerns about HGE reflect broader societal anxieties about the boundaries of genetic intervention and its potential impact on disability and societal views of suffering. The study underscores the importance of considering both stated values and underlying beliefs when engaging in discussions around HGE and in developing relevant guidelines and policies. The interpretation of values such as 'respect for persons,' 'social justice,' 'non-discrimination,' and 'equal moral worth' were heavily influenced by religious beliefs. This is especially relevant to the WHO’s framework for governance, which necessitates inclusive considerations of cultural and religious values related to HGE.
Conclusion
This study provides valuable insights into the complex perspectives of religiously-affiliated midwife counselors on prenatal anomaly screening and HGE. The findings demonstrate the need for medical education that balances professional socialization with individual subjectification, allowing for a nuanced understanding of the interplay between personal values and professional ethics. Future research should broaden the scope of participants, including non-religious and individuals from diverse cultural and social backgrounds, to gain a more comprehensive understanding of the societal implications of HGE. Policymakers should account for the influence of personal beliefs when considering the implementation of such potentially impactful technologies.
Limitations
The study's limitations include the relatively small sample size and the focus on only Christian and Muslim counselors. The findings might not be generalizable to all healthcare providers or to those with different religious or secular belief systems. Furthermore, the study was conducted several years before the data analysis, potentially introducing some recall bias. Future research should address these limitations by increasing the sample size and diversity of participants and employing methods that minimize recall bias.
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