Portuguese Public Attitudes Regarding Contact Between Healthcare Professionals and Patient’s Relatives for Genetic Risk Disclosure: A Cross-Sectional Study

Iara Ribeiro; João Tavares; Liliana Sousa; Álvaro Mendes

doi:10.20344/amp.22204

Authors

Iara Ribeiro Department of Education and Psychology. Universidade de Aveiro. Aveiro. Portugal. https://orcid.org/0000-0001-7487-7823
João Tavares CINTESIS@RISE. School of Health Sciences. Universidade de Aveiro. Aveiro. Portugal. https://orcid.org/0000-0003-3027-7978
Liliana Sousa CINTESIS@RISE. Department of Education and Psychology. Universidade de Aveiro. Aveiro. Portugal. https://orcid.org/0000-0003-3491-7119
Álvaro Mendes Centre for Predictive and Preventive Genetics (CGPP). Institute for Molecular and Cell Biology (IBMC). Universidade do Porto. Porto. Portugal; Instituto de Investigação e Inovação em Saúde (i3S). Universidade do Porto. Porto. Portugal. https://orcid.org/0000-0002-8766-7646

DOI:

https://doi.org/10.20344/amp.22204

Keywords:

Aconselhamento Genético, Comunicação, Confidencialidade, Família, Pessoal de Saúde, Predisposição Genética para Doença, Relações Profissional-Doente

Abstract

Hereditary diseases can affect patients and their biological relatives, who may be at risk of developing these conditions or transmitting them to their descendants. This study explores the attitudes of a sample of Portuguese people towards receiving information about genetic risks and policies on the disclosure of such risks. An online survey using 5-point Likert scale statements (from 1 – “totally disagree” to 5 – “totally agree”) was distributed through social media and in public places, resulting in a sample of 1034 respondents with a mean (M) age of 38.58 (standard-deviation, SD = 14.91) years old; 75.4% were women, 74.4% had higher education, and 55.5% were childless. The main findings suggest that participants strongly prefer to be informed about genetic risks by a doctor rather than not being informed at all (M = 4.75; SD = 0.67), are less supportive of learning of genetic risks first by a close relative (M = 3.94; SD = 1.11), favor legislation allowing healthcare professionals to contact them even if their relatives do not wish to disclose the information (M = 4.47; SD = 0.87), and are less favorable towards laws requiring individuals to inform their direct family members of their genetic risks (M = 3.88; SD = 1.27). These findings could inform ongoing discussions about the roles and responsibilities of healthcare professionals in conveying relevant information to at-risk relatives.

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