Résumés
Abstract
Background: With multiple options available today to become a parent, how does the matter of genetic relatedness factor into adolescent cancer patients’ fertility preservation (FP) decision making? This study reports on and normatively analyzes this aspect of FP decision making. Methods: A convenience sample of Israeli adolescent cancer survivors and their parents were invited to participate in individual, semi-structured interviews. Results: In discussing the importance of genetic relatedness to future children or grandchildren, participants repeatedly brought up the interrelated issues of nature, normalcy, and personal identity. Regardless of preference or ambivalence for genetic relatedness, the majority of participants were aware of alternative parenting options and noted both their advantages and disadvantages. However, knowledge of alternative parenting options was not uniform. Conclusions: To ensure that adolescent patients and their parents make informed FP decisions that meet their personal goals and values, it is important for physicians to discuss alternative parenting options with them in a culturally sensitive manner. Greater credence also should be given to those who question the importance of genetic relatedness.
Keywords:
- fertility preservation,
- oncofertility,
- decision making,
- genetic relatedness,
- alternative parenting options
Résumé
Contexte : Avec les multiples options disponibles aujourd’hui pour devenir parent, comment la question de la parenté génétique est-elle prise en compte dans la décision de préservation de la fertilité (PF) des adolescents atteints de cancer? Cette étude rend compte et analyse de manière normative cet aspect de la prise de décision en matière de PF. Méthodes : Un échantillon de commodité d’adolescents survivants israéliens du cancer et leurs parents a été invité à participer à des entretiens individuels semi-structurés. Résultats : En discutant de l’importance de la parenté génétique des futurs enfants ou petits-enfants, les participants ont soulevé à plusieurs reprises les questions interdépendantes de la nature, de la normalité et de l’identité personnelle. Indépendamment de leur préférence ou de leur ambivalence à l’égard de la parenté génétique, la majorité des participants étaient conscients des autres options parentales et en ont noté les avantages et les inconvénients. Cependant, la connaissance des options parentales alternatives n’était pas uniforme. Conclusions : Afin de garantir que les patients adolescents et leurs parents prennent des décisions relatives à la PF qui répondent à leurs objectifs et valeurs personnels, il est important que les médecins discutent avec eux des options parentales alternatives en tenant compte de leur culture. Il faut également accorder plus de crédit à ceux qui remettent en question l’importance de la parenté génétique.
Mots-clés :
- préservation de la fertilité,
- oncofertilité,
- prise de décision,
- lien génétique,
- options parentales alternatives
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Acknowledgements / Remerciements
The authors thank Alon Steinhorn for reviewing and editing translations of the interview transcripts, as well as the University of Basel’s Botnar Foundation for funding the study.
Les auteurs remercient Alon Steinhorn pour la révision et la correction des transcriptions traduites des entretiens, ainsi que la Fondation Botnar de l’Université de Bâle pour le financement de l’étude.
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