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

The implementation of the noninvasive prenatal test has shown the importance of involving future care providers in healthcare innovations at an early stage. Therefore, in this explorative study in-depth interviews were performed with Dutch midwife counselors who explicitly identify as religious, to explore how they currently deal with their worldview during counseling for prenatal anomaly screening and regarding their perspectives on heritable genome editing (HGE). HGE is a potentially disruptive technology in which a pregnancy is initiated with a modified embryo or gamete, thus passing on modified genes to a future child and the following generations. Currently, a significant majority of countries prohibit HGE. However, implications for healthcare policy and practice are discussed in an ongoing scientific and societal dialogue. Eleven counselors participated: eight Christians and three Muslims. Two main themes were identified: ‘a search for role identity as a healthcare counselor’ and ‘concerns about the application of HGE’. Our findings showed that both values and underlying worldview-based beliefs influence perspectives on current and emerging reproductive techniques. Healthcare counselors search for ways to harmonize their professional role with contrasting values based on worldview-based beliefs. Moreover, for HGE, counselors fear ‘slippery slopes’ regarding the boundaries between treatment and enhancement, the severity assessment of certain conditions, and society’s appreciation for the quality of life of people with disabilities. Regarding future implementation, counselors’ medical education might benefit from a focus not only on qualification (acquiring knowledge) but also on balancing between socialization (e.g., adhering the norm of nondirective counseling) and subjectification (being a ‘self’ in relation to everything learned). In the global call for broad public and stakeholder engagement to explore the acceptability of HGE, the influence of both values and beliefs should be deliberated.

Wendy P. Geuverink, Janneke T. Gitsels, Martina C. Cornel, Bert Jan Lietaert Peerbolte, Christina Prinds, Carla G. van El, Linda Martin