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PLoS One. 2017 Sep 29;12(9):e0185779. doi: 10.1371/journal.pone.0185779. eCollection 2017.

Clinicians' attitude towards family planning and timing of diagnosis in autosomal dominant polycystic kidney disease.

Author information

1
Department of Pediatric Nephrology, University Hospital of Leuven, Leuven, Belgium.
2
Department of Development and Regeneration, KU Leuven, Leuven, Belgium.
3
University of New Haven, New Haven, CT, United States of America.
4
Department of Nephrology, University Hospital of Brussels, Brussels, Belgium.
5
Department of Pediatrics and Center for Molecular Medicine, University Hospital of Cologne, Cologne, Germany.
6
Department of Genetics, KU Leuven-University Hospital of Leuven, Leuven, Belgium.
7
Center for Human Genetics, Bioscientia, Ingelheim, Germany.
8
Department of Medicine, University Hospital of Freiburg, Freiburg, Germany.
9
Division of Nephrology, University of Liège Hospital (ULg CHU), Liège, Belgium.
10
Groupe Interdisciplinaire de Génoprotéomique Appliquée (GIGA), Cardiovascular Sciences, University of Liège, Liège, Belgium.
11
Department of Microbiology and Immunology, KU Leuven, Leuven, Belgium.
12
Department of Nephrology, Dialysis and Renal Transplantation, University Hospital of Leuven, Leuven, Belgium.
13
Centre for Biomedical Ethics and Law, Department of Public Health and Primary Care, University of Leuven, Leuven, Belgium.
14
Division of Pediatric Nephrology, Centre for Pediatrics and Adolescent Medicine, Heidelberg University Medical Centre, Heidelberg, Germany.

Abstract

Several ethical aspects in the management of Autosomal Dominant Polycystic Kidney Disease (ADPKD) are still controversial, including family planning and testing for disease presence in at-risk individuals. We performed an online survey aiming to assess the opinion and current clinical practice of European pediatric and adult nephrologists, as well as geneticists. A total of 410 clinicians (53% male, mean (SD) age of 48 (10) years) responded, including 216 pediatric nephrologists, 151 adult nephrologists, and 43 clinical geneticists. While the 3 groups agreed to encourage clinical testing in asymptomatic ADPKD minors and adults, only geneticists would recommend genetic testing in asymptomatic at-risk adults (P<0.001). Statistically significant disagreement between disciplines was observed regarding the ethical justification of prenatal genetic diagnosis, termination of pregnancy and pre-implantation genetic diagnosis (PGD) for ADPKD. Particularly, PGD is ethically justified according to geneticists (4.48 (1.63)), whereas pediatric (3.08 (1.78); P<0.001) and adult nephrologists (3.66 (1.88); P<0.05) appeared to be less convinced. Our survey suggests that most clinicians support clinical testing of at-risk minors and adults in ADPKD families. However, there is no agreement for genetic testing in asymptomatic offspring and for family planning, including PGD. The present data highlight the need for a consensus among clinicians, to avoid that ADPKD families are being given conflicting information.

PMID:
28961265
PMCID:
PMC5621697
DOI:
10.1371/journal.pone.0185779
[Indexed for MEDLINE]
Free PMC Article

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