ESPE Abstracts (2019) 92 P1-377

International Consensus: Ovarian Tissue Cryopreservation in Young Turner Syndrome Patients. Outcomes of an Ethical Delphi Study Including 55 Experts from 16 Different Countries.

Myra Schleedoorn, Bjarne Mulder, Didi Braat, Catharina Beerendonk, Ron Peek, Willianne Nelen, Evert van Leeuwen, Janielle van der Velden, Kathrin Fleischer


Radboud university medical centre, Nijmegen, Netherlands


Summary Answer: The majority of the expert panel states that ovarian tissue cryopreservation (OTC)should be offered to young females with Turner syndrome (TS)

Background: OTC is a valid option to preserve the fertility of young females at risk of iatrogenic premature ovarian insufficiency (POI). Offering OTC to females with a genetic cause of POI seems a logical next step. One of the most common genetic disorders related to POI is TS. Due to an early depletion of the ovarian reserve, most females with TS are confronted with infertility before reaching adulthood. However, before offering OTC as an experimental fertility preservation option to young females with TS, the medical and ethical concerns need to be addressed first.

Design: A three-stage ethical Delphi study was conducted to discuss the pros and cons of OTC in young females with TS in a systematic manner. The aim of this study was to reach group consensus and to form an international standpoint based on selected key statements. The study was conducted between February and December 2018.

Methods: A mixed panel of 12 gynaecologists, 13 (paediatric) endocrinologists, 10 medical ethicists and 20 patient representatives participated in this international Delphi study. Panellists were selected because of their expertise in TS, fertility preservation or medical ethics. In the first two rounds, all experts were asked to rate and rank 38 statements and 155 supporting arguments regarding OTC in females with TS. Opinions were swayed via repetitive feedback after each round. The selection of key statements was based on strict inclusion criteria.

Results: A total number of 46 participants from 16 different countries completed the first Delphi-round (response rate 84%). Based on strict selection criteria, 6 key statements were selected and 13 statements were discarded. The remaining 19 statements and 2 additional statements submitted by participants were re-evaluated in the second round by 41 participants (response rate 76%). The analysis of the second survey resulted in the inclusion of 2 additional key statements. The final selection of key statements was approved by 96% of the participants. After the pros and cons were discussed and the main arguments were selected, the majority of our expert panel (75%) believed that OTC should be offered to young females with TS in a safe and controlled research setting. Arguments that focused on beneficence, autonomy, and justice outweighed statements regarding non-maleficence. The remaining participants (25%) did not object, but chose to remain neutral.