Communication of Information about Genetic Risks: Putting Families at the Center

作者: Álvaro Mendes , Alison Metcalfe , Milena Paneque , Liliana Sousa , Angus J Clarke

DOI: 10.1111/FAMP.12306

关键词:

摘要: Genetic information is a family affair. With the expansion of genomic technologies, many new causal genes and variants have been established potential for molecular diagnoses increased, with implications not only patients but also their relatives. The need genetic counseling intrafamilial circulation on risks grew accordingly. Also, amount and, particularly, complexity to convey multiplied. Sharing about members, however, has never an easy matter often becomes source personal familial conflicts distress. Ethical requisites generally prevent healthcare professionals from directly contacting consultands' relatives (affected or still at risk), who feel unsupported throughout that process. We discuss here communication members. first consider testing as basis family-centered health care, opposed predominant focus individual. reviewed literature sharing risk associated ethical issues professionals. Some clinical cases are presented discussed, key meeting needs individuals families addressed. argue inextricably linked communicating process grounded within broader milieu relationships functioning. conclude more approach interventions can promote sensitive attitudes provision family, well its inclusion in educational training programmes

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