The impact of counselors' values and religious beliefs on their role identity and perspectives on heritable genome editing: a qualitative interview study

Rapid advances in genetics, including CRISPR-based techniques coupled with IVF, are expanding reproductive options and prompting ethical debate on which interventions are acceptable and how decisions should be made. Heritable genome editing (HGE) would initiate pregnancy with a modified embryo or gamete, transmitting changes to future generations, and is currently prohibited in most countries. Prior work shows healthcare professionals’ worldviews can influence counseling, and that values and beliefs are seldom explicitly discussed in prenatal screening conversations. In the Netherlands, midwives play a central role in counseling for prenatal anomaly screening, with an emphasis on informed, autonomous, and non-directive decision-making—though discussing values can be difficult in practice. This study explores: (a) how religious midwife counselors handle their religious worldview in counseling for prenatal anomaly screening, and (b) how counselors’ values, given their religious worldview, shape perspectives on HGE. It also uses current NIPT counseling as a lens to anticipate challenges that may arise with future HGE implementation.

The paper situates HGE within ongoing scientific, ethical, and policy debates calling for robust public and stakeholder engagement. It contrasts embryo selection via PGT—beneficial but limited and often resulting in discarded affected embryos—with the potential of CRISPR-based approaches to overcome some limitations. It references global policy prohibitions on HGE, WHO ethical values and governance frameworks, and existing research on nondirectivity and worldview impacts in counseling. The literature highlights ambiguities in defining ‘serious’ disease, concerns about eugenics and enhancement, societal valuations of disability, and the evolving concept of non-directive counseling that may include engaged, value-sensitive dialogue.

Design: Qualitative, explorative interview study among Dutch midwife counselors who provide pregnancy care including prenatal anomaly screening. Participants: Practicing Christian or Islamic believers, ascertained using the European Values Survey dimensions of religiosity (practice, belief, self-definition). Sampling and recruitment: Purposive sampling followed by snowballing; initial recruits identified via an author (a midwife counselor). Data collection: Semi-structured, open interviews conducted March–June 2018 by two researchers (JG, LM) at locations chosen by participants or by telephone. Interviews were audio-recorded with permission, field notes made, and transcripts produced verbatim. Average interview duration ~60 minutes. Prior to interviews, participants received study information, privacy statements, an article on CRISPR-Cas9, and provided written informed consent; interview questions were not shared in advance. Instruments: Interview guide covered five topics: religious worldview; counseling for prenatal anomaly screening; views on HGE; responsible implementation of HGE; and needs for counseling about HGE (see topic list). During interviews, two exemplar disorders (Duchenne muscular dystrophy; beta-thalassemia) were used to ground discussions. Analysis: Thematic analysis (Braun & Clarke) using ATLAS.ti v9, following six phases from familiarization to reporting. Two researchers independently coded the first five interviews; a third provided feedback. Codes were organized into categories and themes in a recursive process with continuous memoing. WHO Expert Advisory Committee values (inclusiveness, caution, fairness, social justice, non-discrimination, equal moral worth, respect for persons, solidarity, global health justice) were used as sensitizing concepts during analysis. Data saturation was reached after 11 interviews. A three-year gap occurred between interviewing and analysis; to avoid recall bias, no member check was conducted.

Participants: 11 religious female midwife counselors (8 Christian, 3 Muslim). Age: <30 (n=4), 30–34 (n=3), 35–39 (n=1), ≥40 (n=3). Work experience: <5 years (n=2), 5–9 (n=6), 10–14 (n=1), ≥15 (n=2). Three participants had a family history of congenital anomalies. Two main themes emerged: 1) Search for role identity as a healthcare counselor: Counselors strive to balance professional commitments—non-directive facilitation of informed, autonomous decisions, medical safety, and promotion of health—with religiously-informed commitments to respect and protect (unborn) human life. Ambivalence was prominent around termination following detected anomalies; counselors described strategies like reflective questioning, offering alternatives (e.g., adoption), or framing language (e.g., referring to the fetus as a child) while aiming to avoid directive influence. The leading role of beliefs: Three clusters of beliefs shaped value interpretation—God as creator; when human life begins (most Christians: at conception; some Muslims: at 40 or 120 days, one personally at conception); and the meaning of suffering (often seen as inevitable with potential intrinsic meaning). These beliefs influenced tensions between respect for client autonomy and respect for unborn life and shaped views on disability and societal perfectionism. 2) Concerns about the application of HGE: While many hoped HGE could reduce suffering from severe hereditary diseases, counselors expressed fears of slippery slopes: shifting thresholds for ‘serious’ disease; devaluation of lives with disability and loss of diversity; and blurred boundaries between treatment, prevention, and enhancement. Religious beliefs again colored value interpretations (e.g., embryo research seen as both a path to promoting health and as potentially violating respect for life if life begins at conception). Some participants categorically opposed HGE as ‘tampering with God’s creation’; others were conditionally supportive (e.g., permissible if before ensoulment at 40 days in Islamic belief). Counselors worried about increased responsibilities if HGE counseling entered preconception care, citing needs for more training, knowledge, scripts on world religions, or referral to specialized counselors/clinical geneticists. Despite personal objections, participants affirmed commitment to nondirective counseling if HGE became available.

The findings address how religious worldviews intersect with professional counseling roles in prenatal screening and anticipated HGE contexts. Counselors’ search for role identity reflects tension between non-directiveness focused on parental autonomy and the impulse—grounded in beliefs about creation, the onset of life, and the meaning of suffering—to also represent the interests of the unborn child and challenge assumptions about perfectionism. The results suggest that non-directiveness should not be conflated with silence about alternative perspectives; thoughtful inclusion of multiple viewpoints can better support authentic autonomy. Framed by Biesta’s domains of educational purpose, counselors feel secure in knowledge/skills (qualification) but need support balancing socialization into professional norms (e.g., nondirectivity) with subjectification (being a reflective ‘self’ with responsibility). Regarding HGE, counselors’ hesitancy and slippery-slope concerns highlight unresolved questions about defining ‘serious’ disease and the impact on societal valuation of disability. The study underscores that WHO-identified values (e.g., respect for persons, non-discrimination, equal moral worth, social justice) are interpreted through underlying beliefs; hence, engagement and policymaking must explicitly consider religious/cultural beliefs alongside values to be meaningful for practice.

Religious midwife counselors actively navigate tensions between professional non-directive counseling and worldview-informed commitments, particularly around termination decisions and emerging technologies like HGE. Counselors anticipate slippery slopes in HGE related to severity thresholds, enhancement, and societal attitudes toward disability, and foresee increased counseling responsibilities and training needs. Practice implications include medical education that, beyond knowledge acquisition, cultivates balance between socialization into professional norms and the capacity for reflective subjectification. For policymakers and researchers pursuing broad engagement on HGE, effective deliberation should address not only shared ethical values but also the religious, cultural, and social beliefs that shape how those values are interpreted. Future research should include diverse (non-)religious and cultural groups, including non-religious and agnostic counselors, to capture a fuller range of beliefs and their influence on counseling and HGE acceptability.

The sample included only practicing religious counselors from Christianity and Islam; perspectives of non-religious, non-practicing religious, or agnostic professionals were not included and may differ. The qualitative study involved a small, purposive sample from the Netherlands. A three-year interval between interviews and analysis occurred, and no member check was conducted (to avoid recall bias), which may limit opportunities for participant validation.