AI Article Synopsis
- The study investigates how uncertainty related to unsolicited findings in clinical genetics affects both counselees and counselors, focusing on two types: non-normative (about facts) and normative (about values).
- It employs qualitative interviews to analyze experiences of 20 counselees and 20 counselors, revealing that counselees face more personal and practical uncertainties, while counselors deal with scientific issues.
- The findings highlight significant moral conflicts that arise in genetic counseling, emphasizing the importance of addressing these uncertainties to improve counseling practices.
Article Abstract
Objectives: Non-normative uncertainty (uncertainty about empirical facts) and normative uncertainty (uncertainty about moral values or beliefs) regarding unsolicited findings (UFs) might play an important role in clinical genetics. Identifying normative uncertainty is of special interest since it might guide towards novel directions for counseling practice. This study aims to gain insight into the role of non-normative and normative uncertainty regarding UFs, as expressed by counselees and counselors.
Methods: We performed a secondary qualitative analysis of interviews with counselees (n = 20) and counselors (n = 20) who had been confronted with UFs. Following a deductive approach, we used Han et al.'s existing theoretical framework of uncertainty, in which we additionally incorporated normative uncertainty.
Results: Major issues of non-normative uncertainty were practical and personal for counselees, whilst counselors' uncertainty pertained mainly to scientific issues. Normative uncertainty was a major theme throughout the interviews. We encountered the moral conflicts of autonomy vs. beneficence and non-maleficence and of autonomy vs. truthfulness.
Conclusion: Non-normative uncertainty regarding UFs highlights the need to gain more insight in their penetrance and clinical utility. This study suggests moral conflicts are a major source of feelings of uncertainty in clinical genetics.
Practice Implications: Exploring counselees' non-normative uncertainties and normative conflicts seems a prerequisite to optimize genetic counseling.
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| http://dx.doi.org/10.1016/j.pec.2023.108064 | DOI Listing |
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