Universität zu Köln

De Rechter, Stephanie, Kringen, Jonathan, Janssens, Peter, Liebau, Max Christoph ORCID: 0000-0003-0494-9080, Devriendt, Koenraad, Levtchenko, Elena, Bergmann, Carsten, Jouret, Francois, Bammens, Bert ORCID: 0000-0002-2477-2633, Borry, Pascal ORCID: 0000-0002-4931-9560, Schaefer, Franz and Mekahli, Djalila ORCID: 0000-0003-0954-6088 (2017). Clinicians' attitude towards family planning and timing of diagnosis in autosomal dominant polycystic kidney disease. PLoS One, 12 (9). SAN FRANCISCO: PUBLIC LIBRARY SCIENCE. ISSN 1932-6203

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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.

Item Type:	Journal Article
Creators:	Creators Email ORCID ORCID Put Code De Rechter, Stephanie UNSPECIFIED UNSPECIFIED UNSPECIFIED Kringen, Jonathan UNSPECIFIED UNSPECIFIED UNSPECIFIED Janssens, Peter UNSPECIFIED UNSPECIFIED UNSPECIFIED Liebau, Max Christoph UNSPECIFIED orcid.org/0000-0003-0494-9080 UNSPECIFIED Devriendt, Koenraad UNSPECIFIED UNSPECIFIED UNSPECIFIED Levtchenko, Elena UNSPECIFIED UNSPECIFIED UNSPECIFIED Bergmann, Carsten UNSPECIFIED UNSPECIFIED UNSPECIFIED Jouret, Francois UNSPECIFIED UNSPECIFIED UNSPECIFIED Bammens, Bert UNSPECIFIED orcid.org/0000-0002-2477-2633 UNSPECIFIED Borry, Pascal UNSPECIFIED orcid.org/0000-0002-4931-9560 UNSPECIFIED Schaefer, Franz UNSPECIFIED UNSPECIFIED UNSPECIFIED Mekahli, Djalila UNSPECIFIED orcid.org/0000-0003-0954-6088 UNSPECIFIED
URN:	urn:nbn:de:hbz:38-217320
DOI:	10.1371/journal.pone.0185779
Journal or Publication Title:	PLoS One
Volume:	12
Number:	9
Date:	2017
Publisher:	PUBLIC LIBRARY SCIENCE
Place of Publication:	SAN FRANCISCO
ISSN:	1932-6203
Language:	English
Faculty:	Unspecified
Divisions:	Unspecified
Subjects:	no entry
Uncontrolled Keywords:	Keywords Language RENAL-DISEASE; CHILDREN; VOLUME; RISK; INDIVIDUALS; MINORS; ADPKD Multiple languages Multidisciplinary Sciences Multiple languages
Refereed:	Yes
URI:	http://kups.ub.uni-koeln.de/id/eprint/21732