P-556 Preliminary data on communication to parents of donorconceived offspring regarding the risks of inherited diseases: Poster

Research output: Unpublished contribution to conferencePoster

Abstract

Study question: How to manage the communication of genetic risks to parents? What’s the impact of this risk on the desire for other children using donor gametes? Summary answer: Description of our experience on communication of genetic risks to parents with donor-conceived offspring and how this information influences the wish for a consecutive child. What is known already: Little is known about the communication of newly identified genetic risks in donor-conceived offspring and the preferences and needs of their parents. More studies on risks of inherited diseases in donorconceived offspring focus on medical evaluation and genetic screening and their limitations and challenges. Studies show an international variability in genetic evaluations, education and informed consent processes (Sims et al., 2010; Isley & Callum, 2013; Dondorp et al., 2014; Isley et al., 2016). However, there is limited knowledge about the wish for a second child using the same donor with a (minor) genetic risk (Squires & Simoglou, 2013). Study design, size, duration: Between June 2015 and December 2017, a qualitative study was performed with 27 parents who have one or more children, conceived using gametes from anonymous sperm donors (n = 23), oocyte donors (n = 3) or both (n = 1). The genetic risk presented after the donors had been qualified for donation. All parents were treated in our fertility unit with gametes from our internal or from an external bank. Twenty two parents had a wish for a second child. Participants/materials, setting, methods: Semi-structured interviews were performed with the parents at our Medical Genetics unit, asking them about: (1) the way they were informed about the genetic risk, (2) their perceptions of the communication by health-care providers, (3) their perceived risk, and if applicable (4) how they would like to realise their wish for a second child. Main results and the role of chance: Twenty one parents were informed about a minor genetic risk by the fertility department when seeking treatment to conceive a second child, 4 parents without seeking treatment, and 2 parents received an e-mail from an external sperm bank. Both parents informed by e-mail, were upset and preferred being informed face-to-face. In the group with the wish for a second child, 2 parents were aghast and worried that they would Abstracts of the 34th Annual Meeting of the ESHRE, Barcelona, Spain 1 to 4 July 2018 i397 never know the risk if they didn’t ask for the treatment. Eleven parents (40%) experienced the risk-communication as emotionally taxing, 10 parents (37%) felt comfortable during this contact. Two parents (7%) regarded the communication as unnecessary; both of them have a wish for a second child. Independent of the medical risk, 55% perceived the risk as high, 14% as moderate and 33% as low. Of the parents wishing for a second child who perceived the risk as high, 7 had doubts (58%) about the way to fulfil their wish, 3 (25%) asked for a different donor, while 2 (17%) asked for the same donor. With a low risk-perception, 6 (67%) wanted to use the same donor, 2 (22%) had doubts and 1 (11%) wanted to use a different donor. Limitations, reasons for caution: The small sample size undermines the representability of the results to a whole population. Variation in how future parents were counselled upon intake may affect how they experienced the communication. Because of the descriptive study-design findings may be open for interpretation. Wider implications of the findings: This research may be a pre-cursor to future research. The issues reported can be used to achieve a higher quality of care. These findings may be a starting point for developing guidelines on counselling, exploring the (ir)relevance of minor genetic risks for
Original languageEnglish
Pagesi398
Publication statusPublished - 2018
EventESHRE 2018 - CCIB, Barcelona, Spain
Duration: 2 Jul 20184 Jul 2018

Conference

ConferenceESHRE 2018
CountrySpain
CityBarcelona
Period2/07/184/07/18

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