23. Juli 2024

The principle of non-directiveness remains an important tenet in genetics. However, the concept has encountered growing criticism over the last two decades. There is an ongoing discussion about its appropriateness for specific situations in genetics, especially in light of recent significant advancements in genetic medicine. Despite the debate surrounding non-directiveness, there is a notable lack of up-to-date international research empirically investigating the issue from the perspective of those who actually do genetic counselling. Addressing this gap, the article delves into the viewpoints and experiences of medical geneticists in Germany and Switzerland. Twenty qualitative interviews were analysed employing reflexive thematic analysis. The insights provided by the team’s qualitative empirical study accord with the ongoing theoretical debate regarding the definition, legitimacy, and feasibility of the principle. An adequately nuanced understanding and application of non-directiveness seems crucial to circumvent the risks inherent in the principle, while promoting patient autonomy and beneficence.

Twenty medical geneticists who work with children in Germany (n=10) and in Switzerland (n=10) (German-speaking part and French-speaking part) were interviewed; fifteen worked in academic hospitals and five in private specialty practices or private laboratories.

This article is part of a larger project that explores ethical considerations associated with genome-wide sequencing in paediatric patients. Here we present the results of one major theme that we found to be significant within the interviews, which is non-directiveness (other topics are published elsewhere such as Eichinger et al. 2023a, 2023b. The topic of non-directiveness was not explicitly included in the interview guide; however, all except two participants elaborated on it in detail during the course of the interview; e.g. when engaging in discussions about questions three, four, or seven of the interview guide (see supplement 1).

Although many brought up the issue of non-directiveness spontaneously, when probed on what the term actually means for them, participants’ responses revealed major uncertainties and divergences in how they conceptualized and used non-directiveness in practice.

Read the full publication on Springer Nature here: https://rdcu.be/dOExE