Fertility in Turner Syndrome

Jacqueline K. Hewitt; Yasmin Jayasinghe; David J. Amor; Lynn H. Gillam; Garry L. Warne; Sonia Grover; Margaret R. Zacharin


Clin Endocrinol. 2013;79(5):606-614. 

In This Article

Ethical Considerations

The primary ethical question raised by these techniques is whether to offer intervention for fertility preservation during childhood/adolescence, and if so, which intervention, and at what stage.

Homologous IVF techniques such as ovarian tissue cryopreservation and oocyte preservation may improve the psychosocial well-being of women with TS, by increasing the chance of having a child with their own genetic complement. Offering these interventions in adolescence promotes autonomy by increasing the range of future options.[55,76] Considerations against include concern that techniques associated with low success rates may produce false hope and later psychosocial harm; concern that risks associated with invasive retrieval of tissue are not outweighed by benefits that can reasonably be expected; concern that the offer of intervention may not actually promote autonomy, where the child with TS is not competent to make her own decision and her future choices are not represented by her parents; and concern that the young person may not comprehend maternal and foetal risks associated with any pregnancy which may ensue. In the case of ovarian tissue cryopreservation, there is a further risk of reduction in fertility by removing potentially viable tissue. Physicians must first do no harm.

If assisted reproduction is offered to young patients who have TS, consideration is required to whether this should be offered to all, or only to those where the probability of success lies above a minimum level. If there is virtually no chance of viable ovarian tissue existing based on clinical and biochemical grounds, then it would be unethical to offer intervention to preserve this tissue, which would be futile and could cause harm.

There are potential legal issues for parents and clinicians regarding the decision to remove and preserve gonadal tissue (with the inherent surgical risk and potential risk of reduction in viable gonadal tissue), on behalf of a child who is unable to consent, rendering a parent or clinician negligent. Reasons for each decision should be articulated and documented. Where tissue is removed from a minor with parental consent, the legalities of who 'owns' the tissue need to be clarified.