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Disclosure behaviour and intentions among 111 couples following treatment with oocytes or sperm from identity-release donors: follow-up at offspring age 1-4 years
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
Division of Obstetrics and Gynaecology, Department of Clinical and Experimental Medicine, Faculty of Health Sciences, Linkoping University.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Obstetrics and Gynaecology. (Reproduktiv hälsa/Sundström Poromaa)
Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge.
2012 (English)In: Human Reproduction, ISSN 0268-1161, E-ISSN 1460-2350, Vol. 27, no 10, 2998-3007 p.Article in journal (Refereed) Published
Abstract [en]

STUDY QUESTION:

Do heterosexual parents of young children following oocyte donation (OD) and sperm donation (SD) tell or intend to tell their offspring about the way he/she was conceived?

SUMMARY ANSWER:

Following successful treatment with oocytes or sperm from identity-release donors in Sweden, almost all heterosexual couples intend to tell their offspring about the way he/she was conceived and some start the information-sharing process very early.

WHAT IS KNOWN AND WHAT THIS PAPER ADDS:

Although the Swedish legislation on identity-release gamete donors has been in effect since 1985, there is a discrepancy between the behaviour of donor-insemination parents and the legal intention that offspring be informed about their genetic origin. The present study contributes data on a relatively large sample of oocyte and sperm recipient couples' intended compliance with the Swedish legislation.

DESIGN AND DATA COLLECTION METHOD:

The present study constitutes a follow-up assessment of heterosexual couples who had given birth to a child following treatment with donated oocytes. Data collection was performed during 2007-2011; participants individually completed a questionnaire when the child was between 1 and 4 years of age.

PARTICIPANTS AND SETTING:

The present study is part of the Swedish Study on Gamete Donation, a prospective longitudinal cohort study including all fertility clinics performing gamete donation in Sweden. For children conceived via OD, 107 individuals (including 52 couples and 3 individuals) agreed to participate (73% response). For children conceived via SD, the response rate was 70% (n = 122 individuals, including 59 couples and 4 individuals). Mean age of participants was 34 years (SD 4.4) and they reported a high level of education.

MAIN RESULTS:

The majority of participants (78%) planned to tell the child about the donation, 16% had already started the information-sharing process and 6% planned not to tell their child about the donation or were undecided. Many were unsure about a suitable time to start the disclosure process and desired more information about strategies and tools for information sharing. Agreement on disclosure to offspring within the couple was related to the quality of the partner relationship.

BIAS AND GENERALIZABILITY:

There is a risk of selection bias, with gamete recipients preferring secrecy and non-disclosure declining study participation. The results may be regarded as partly generalizable to heterosexual couples with young children following treatment with gametes from legislatively mandated identity-release donors in an established donor programme.

STUDY FUNDING/COMPETING INTERESTS:

Study funding by Merck Serono, The Swedish Research Council and The Family Planning Fund in Uppsala. No conflicts of interest to declare.

Place, publisher, year, edition, pages
2012. Vol. 27, no 10, 2998-3007 p.
National Category
Obstetrics, Gynecology and Reproductive Medicine
Identifiers
URN: urn:nbn:se:uu:diva-187146DOI: 10.1093/humrep/des285ISI: 000308885200016PubMedID: 22859508OAI: oai:DiVA.org:uu-187146DiVA: diva2:573836
Available from: 2012-12-03 Created: 2012-12-03 Last updated: 2017-12-07Bibliographically approved
In thesis
1. The child’s best interest: Perspectives of gamete recipients and donors
Open this publication in new window or tab >>The child’s best interest: Perspectives of gamete recipients and donors
2015 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Background: An increasing number of couples turn to treatment with oocyte or sperm donation, but there is limited knowledge regarding the consequences of these treatments in a program using identifiable donors. Aim: The overall aim was to study information-sharing among heterosexual couples following identity-release gamete donation. A further aim was to study donors’ attitudes towards future contact with donation offspring. Methods: The four studies were part of The Swedish Study on Gamete Donation; a prospective, longitudinal study of donors and recipients of donated oocytes and sperm. Study I and II had a quantitative approach with recipients of donated oocytes or sperm participating through questionnaires at start of treatment, two months after the first treatment and when their child was 1-4 years old. Study III was a qualitative interview study with 30 parents following sperm donation with school-aged children. Study IV had a quantitative approach with oocyte and sperm donors participating through questionnaires 5-8 years post-donation. Results: Study I revealed that the recipients of donated gametes in general were open about their treatment with the people around them and supported disclosure to offspring regarding his/her genetic origin. Study II reported that most of those who became parents following donor conception intended to share information about the donation with their offspring and some had already started the information-sharing process with their young child. Study III described information sharing with the offspring to be a process of several levels, revealing various amounts of information about the way of conception. The parent was seen to be the owner of the process and moving the process forward with different aspects and the reactions of the offspring serving as driving or impeding forces of the process. Study IV reported that a majority of the gamete donors seem to have a positive or neutral attitude towards a future meeting with a donation offspring. Conclusion: The present thesis suggests that there is a trend towards more openness among recipients of donated gametes in Sweden. It also points out that most recipients and donors within the Swedish gamete donation programme acknowledge the child’s right to his/her genetic origin and have the best interest of the child in mind.

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2015. 73 p.
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 1152
Keyword
Assisted reproduction, heterosexuals, sperm donation, oocyte donation, donor, disclosure, information-sharing, quantitative, qualitative
National Category
Obstetrics, Gynecology and Reproductive Medicine
Identifiers
urn:nbn:se:uu:diva-264860 (URN)978-91-554-9388-2 (ISBN)
Public defence
2015-12-11, Sal IV, Universitetshuset, Biskopsgatan 3, Uppsala, 13:15 (Swedish)
Opponent
Supervisors
Available from: 2015-11-19 Created: 2015-10-19 Last updated: 2016-01-27

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Isaksson, StinaSkoog Svanberg, Agneta

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