Literature DB >> 22779422

Regulating the communication of genetic risk information: the Italian legal approach to questions of confidentiality and disclosure.

L Battistuzzi1, R Ciliberti, F Forzano, F De Stefano.   

Abstract

Communication of genetic risk is a complex process in which the rights of the individual and those of relatives may conflict with regard to the information revealed by DNA testing. If patients who participate in clinical genetic testing refuse to share their genetic information with at-risk relatives, healthcare professionals need to reach a proper ethical balance between the right of individual patients regarding the confidentiality of their genetic test result and the right of families to be informed about their genetic risk. Rules and legislation in most countries generally protect the confidentiality of medical information but allow limited disclosure of genetic test results without the patient's consent in specific cases when certain conditions are met. The aim of this article is to draw attention to how Italian policymakers have attempted to balance protection of autonomy and confidentiality, and protection of health by means of a hybrid instrument. Furthermore, we show that some of the requirements of that instrument depart from the most widely recognized standards for non-consensual disclosure of genetic risk information, while at the same time allowing an unusually high level of discretion to healthcare professionals involved in genetic counseling and testing.
© 2012 John Wiley & Sons A/S.

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Year:  2012        PMID: 22779422     DOI: 10.1111/j.1399-0004.2012.01935.x

Source DB:  PubMed          Journal:  Clin Genet        ISSN: 0009-9163            Impact factor:   4.438


  4 in total

Review 1.  How communication of genetic information within the family is addressed in genetic counselling: a systematic review of research evidence.

Authors:  Álvaro Mendes; Milena Paneque; Liliana Sousa; Angus Clarke; Jorge Sequeiros
Journal:  Eur J Hum Genet       Date:  2015-08-12       Impact factor: 4.246

2.  Definitions of genetic testing in Italian legal documents.

Authors:  Linda Battistuzzi; Rosagemma Ciliberti; William Bruno; Francesco De Stefano
Journal:  J Community Genet       Date:  2012-12-18

3.  The challenges of the expanded availability of genomic information: an agenda-setting paper.

Authors:  Pascal Borry; Heidi Beate Bentzen; Isabelle Budin-Ljøsne; Martina C Cornel; Heidi Carmen Howard; Oliver Feeney; Leigh Jackson; Deborah Mascalzoni; Álvaro Mendes; Borut Peterlin; Brigida Riso; Mahsa Shabani; Heather Skirton; Sigrid Sterckx; Danya Vears; Matthias Wjst; Heike Felzmann
Journal:  J Community Genet       Date:  2017-09-26

4.  Self-determination, healthcare treatment and minors in Italian clinical practice: ethical, psychological, juridical and medical-legal profiles.

Authors:  Rosagemma Ciliberti; Linda Alfano; Ilaria Baldelli; Francesco De Stefano; Alessandro Bonsignore
Journal:  Acta Biomed       Date:  2018-02-28
  4 in total

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