What do families affected by Turner Syndrome think of ovarian tissue freezing in childhood?

Abstract

Ovarian tissue freezing (OTF), currently used to preserve fertility for girls and women with cancer, is beginning to be considered for conditions that cause ovarian insufficiency in childhood, such as Turner Syndrome (TS). This article addresses the gap in information on how women with TS and their families view OTF and the values that inform the decision to use it. It reports qualitative findings on the perceived benefits and challenges of OTF, using a purposive sample of 19 women with TS and 11 mothers of girls with TS in the UK, taken from a wider study on how reproductive choices are shaped by TS. It concludes by looking at ways to address the potential use of OTF with families. Most participants strongly supported the option of OTF. Perceived benefits included the potential for natural conception and a genetically-related child, and increasing the agency of women with TS. Perceived challenges included the invasive nature of tissue collection, the age it would need to be performed, and how girls and their family would be informed and supported. Some participants also identified the impact on a girl’s future fertility and the possibility that TS is heritable as barriers.

Keywords:

• Turner syndrome
• ovarian tissue cryopreservation
• reproductive preservation
• fertility

Acknowledgments

Many thanks to the participants, and the patient organizations, the Turner Syndrome Support Society and Ragdolls UK, for their support of this project. Thanks also to Dr Isabelle Demeestere and Professor Melanie Davies for their advice on TS heritability. This work was supported by a Mildred Blaxter Post-Doctoral Fellowship from the Foundation for the Sociology of Health and Illness.

Disclosure statement

No potential conflict of interest was reported by the author(s).