PP901 - Ethical Considerations When Introducing Genetic Screening in Children with Hearing Loss

Abstract:
When introducing genetic investigation in the work-up of children with hearing loss, ethical considerations are crucial. In this presentation, ethical issues will be identified, and arguments for and against genetic screening will be discussed. Various agents involved and their specific interests are considered, including the child, parents, extended family, patient organizations, health care providers, and society. These interests are tested against ethical principles applied in health care, such as autonomy and "do no harm." By addressing ethical issues, health care providers can gain confidence when counseling parents about genetic screening.

Summary:

Background
The possibility of testing for genetic causes of hearing loss is becoming more available and affordable. Since both parents and health care providers often wish to find the cause of a child's hearing loss, genetic testing is increasingly used. At the Department of Audiology, Skåne University Hospital in Lund, Sweden, whole genome sequencing includes 180 genes. However, introducing genetic screening of children with hearing loss necessitates addressing ethical issues.

Rationale/Purpose
Existing literature on the ethics of genetic testing for hearing loss often focuses on the opinions of specific groups, such as parents of children with hearing loss or individuals who identify with Deaf culture. While these views are valuable, ethical considerations must go beyond current opinions. The purpose of this study is to identify ethical dilemmas and conflicting viewpoints to provide health care providers with a structured framework for making informed decisions and offering parental guidance.

Methods
A literature review was conducted using the databases PubMed and PhilPapers. Information from the literature and clinical experience was used to identify the various agents affected by genetic testing: the child, parents, extended family, patient organizations, health care providers, and society as a whole. Ethical dilemmas were identified from both the literature and clinical practice. Arguments for and against various standpoints were structured in a table following methods used in medical ethics. The interests of the different agents were then related to core ethical principles in health care: patient autonomy, beneficence (doing good), non-maleficence (do no harm), and equal treatment.

Results
The ethical dilemmas identified ranged from small, practical questions to larger, unresolved issues that remain important for health care providers to address. Recognizing these dilemmas can help providers offer more mature and trustworthy genetic counseling to parents.

Importance
Genetic screening is becoming an integral part of evaluating children with hearing loss due to its increasing availability, affordability, and the useful information it provides. However, a structured ethical analysis is lacking in the literature. This study aims to fill that gap by providing a foundation for such an analysis, which could greatly benefit clinicians who incorporate genetic testing in their evaluations. Addressing ethical considerations — even when not all dilemmas have clear answers — can help health care providers feel more confident and prepared for complex situations when presenting genetic information to parents. All new medical routines, including genetic testing, should involve ethical considerations to ensure responsible practice.