Abstract

ABSTRACTBackground: Increasing use of genetic technologies in clinical and research settings increases the potential for misattributed paternity to be identified. Yet existing guidance from the President's Commission for the Study of Ethical Problems in Biomedical and Behavioral Research and the Institute of Medicine (among others) offers contradictory advice. Genetic health professionals are thus likely to vary in their practice when misattributed paternity is identified, and empirical investigation into the disclosure of misattributed paternity is scarce. Given the relevance of this ethical dilemma and its significance to users of genetic services, this study aimed to investigate the attitudes of lay people with regard to the disclosure of misattributed paternity. Methods: An online questionnaire was hosted and advertised through Amazon's Mechanical Turk to 200 United States residents aged 18 years or older. Respondents were asked to rate (via a Likert scale) the ethical permissibility of possible actions a clinician may carry out when misattributed paternity is identified. Data analysis consisted of preliminary descriptive analysis, chi-squared analysis, and Wilcoxon signed-rank tests. Results: There was no clear majority support for many of the options surveyed across different contexts, with only six out of ten scenarios displaying some general consensus. Men were more likely to support scenarios where the father is informed of paternity. Importantly, participants' views varied according to whether the desires of the father were previously expressed, suggesting that perceptions of the permissibility of a clinician's action will depend on the interests of all parties affected. Conclusions: This sample of the general public showed attitudes that were, at least to some degree, at variance with some professional guidelines. We give arguments for why at least some of these attitudes might be justified. We argue that case-specific judgments should be made and outline some of the relevant ethical considerations. While general guidelines ought to be considered, context-specific moral judgments cannot be avoided.

Highlights

  • Increasing use of genetic technologies in clinical and research settings increases the potential for misattributed paternity to be identified

  • Misattributed paternity, where the assumed father is not the biological father, is an incidental finding that is encountered by clinicians conducting genetic testing in families or in the genetic research setting

  • The questionnaire was reviewed by several experts who have had considerable experience relating to the dilemmas presented in the vignettes, including a clinical geneticist and a general practitioner

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Summary

Introduction

Increasing use of genetic technologies in clinical and research settings increases the potential for misattributed paternity to be identified. The revolution of advanced genetic and genomic technologies in clinical settings has increased the potential for incidental findings coming to light. Incidental findings are those findings that are unanticipated or unrelated to the original purpose for which the testing occurred (Wolf et al 2008). Misattributed paternity, where the assumed father is not the biological father, is an incidental finding that is encountered by clinicians conducting genetic testing in families or in the genetic research setting. The large discrepancy in the rate of misattributed paternity is thought to be due to nonrepresentative populations in some studies, and attributed to cultural and societal factors (Bellis et al 2005)

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