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 language | English |
|---|---|
| Pages | i398 |
| Publication status | Published - 2018 |
| Event | ESHRE 2018 - CCIB, Barcelona, Spain Duration: 2 Jul 2018 → 4 Jul 2018 |
Conference
| Conference | ESHRE 2018 |
|---|---|
| Country/Territory | Spain |
| City | Barcelona |
| Period | 2/07/18 → 4/07/18 |
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