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STUDY QUESTION: How do heterosexual parents experience identity-release donation when adult children have obtained information about their sperm donor?

SUMMARY ANSWER: Adult offspring's receipt of identifying information about the sperm donor challenged the fathers' role as a parent, which was reflected in how parents positioned the donor in relation to the family.

WHAT IS KNOWN ALREADY: An increasing number of countries provide access to treatment with identity-release or 'open-identity' donors. However, there is limited knowledge about how parents experience and manage the situation when adult offspring obtain identifying information about the donor and may even establish contact with him.

STUDY DESIGN, SIZE, DURATION: This qualitative interview study included 23 parents whose offspring had obtained information about their sperm donor. Interviews were conducted from October 2018 to January 2019.

PARTICIPANTS/MATERIALS, SETTING, METHODS: A purposive sample of parents (15 mothers and 8 fathers) was recruited via adult offspring, who had requested identifying donor information at five Swedish University hospitals. All participating parents were part of a heterosexual couple who had conceived with sperm from an identity-release donor. Individual semi-structured interviews were conducted face-to face or via telephone, and transcribed audio recordings were analyzed using reflexive thematic analysis.

MAIN RESULTS AND THE ROLE OF CHANCE: The parents expressed diverse experiences related to their parenthood and the presence of the donor after offspring had obtained information about him; these were described in two themes. The theme 'Navigating (in)visible markers of parenthood' describes parenthood as embedded with dichotomous meanings of nature and nurture that parents navigated in relation to social approval. The theme 'Positioning the donor in a new landscape' describes how parents managed the presence of the donor by positioning him at a distance or acknowledging him as a person or even as part of the family, while some struggled to position him, giving rise to ambivalent feelings. The absence of genetic connectedness challenged the father's role as parent, which was reflected in parents' positioning of the donor.

LIMITATIONS, REASONS FOR CAUTION: The study was performed within the context of the Swedish legislation on identity-release donation and is based on experiences of heterosexual couples who had used sperm donation and had informed their offspring about their donor conception. This, together with the fact that parents' accounts were predominantly represented by mothers, must be taken into consideration regarding transferability to other populations.

WIDER IMPLICATIONS OF THE FINDINGS: Negotiations of social and genetic parenthood are still present among parents many years after treatment and may resurface when adult offspring obtain the donor's identity. Access of the adult offspring to identifying information about the donor may have unexpected consequences for family relations, including expanding the family to include the donor. Challenges related to male infertility and family dynamics indicate that parents should have access to counseling and support to manage family life with varying genetic linkage within and outside the family unit.

STUDY QUESTION How do heterosexual parents reason about and experience information-sharing with offspring following identity-release sperm donation?

SUMMARY ANSWER Sharing information about using donor-conception with offspring is a complex process at several levels, with the parent's personal beliefs and the child's responses serving as driving or impeding forces for the information-sharing process.

WHAT IS KNOWN ALREADY The overall view of disclosure in gamete donation has shifted from secrecy to openness, but there is still uncertainty among parents concerning how and when to tell the child about his/her genetic origin. Most research on donor-conceived families has focused on donation treatment under anonymous or known circumstances, and there is a lack of studies in settings with identity-release donations.

STUDY DESIGN, SIZE, DURATION A qualitative interview study among 30 parents following identity-release sperm donation treatment. Interviews were conducted from February 2014 to March 2015.

PARTICIPANTS/MATERIALS, SETTING, METHODS The present study is part of the prospective longitudinal Swedish Study on Gamete Donation (SSGD), including all fertility clinics performing gamete donation in Sweden. A sample of participants in the SSGD, consisting of heterosexual parents with children aged 7–8 years following identity-release sperm donation, participated in individual semi-structured interviews.

MAIN RESULTS AND THE ROLE OF CHANCE The analysis revealed one main theme: information-sharing is a process, with three subthemes; (i) the parent as process manager, (ii) the child as force or friction and (iii) being in the process. The first two subthemes were viewed as being linked together and their content served as driving or impeding forces in the information-sharing process.

LIMITATIONS, REASONS FOR CAUTION The fact that the study was performed within the context of the Swedish legislation on identity-release donation must be taken into consideration as regards transferability to other populations, as this may affect parents' reasoning concerning their information-sharing with the child.

WIDER IMPLICATIONS OF THE FINDINGS The present findings highlight the role of the donor-conceived child in the information-sharing process and may contribute to develop counselling that increases parents' confidence in handling children's reactions to information about their genetic origin.

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.

Objective

To investigate the attitudes and preferences regarding future contact with donation offspring among identity-release donors of oocytes or sperm.

Design

Longitudinal cohort study.

Setting

University-based fertility clinics in Sweden.

Patient(s)

A total of 210 women and men were questioned 5–8 years after their donation of oocytes or sperm.

Intervention(s)

Questionnaires given to donors prior to their donation and 5–8 years after donation.

Main Outcome Measure(s)

Donors' attitudes and preferences regarding future contact with their donation offspring.

Result(s)

A majority of identity-release oocyte (65%) and sperm (70%) donors were positive toward being contacted by an offspring of mature age. More than half wanted to be notified by the clinic when an offspring requested information about them, but about a third were negative toward receiving this information. One in four reported a need for counseling regarding future contact with an offspring.

Conclusion(s)

Several years after donation, a majority of identity-release oocyte and sperm donors show positive attitudes toward future contact with their offspring. Donors appear to have different preferences for information and support regarding such contact. Fertility clinics and health-care services should provide counseling regarding contact with an offspring to the donors who express a need for this.

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.

BACKGROUND

Two decades after the introduction of Swedish legislation that allows children born as a result of gamete donation access to identifying information about the donor, a nationwide multicentre study on the psychosocial consequences of this legislation for recipients and donors of gametes was initiated in 2005. The aim of the present study was to investigate recipient couples' attitudes and behaviour regarding disclosure to offspring and others, attitudes towards genetic parenthood and perceptions of information regarding parenthood after donation.

METHODS

The present study is part of the prospective longitudinal 'Swedish study on gamete donation', including all fertility clinics performing donation treatment in Sweden. A consecutive cohort of 152 heterosexual recipient couples of donated oocytes (72% response) and 127 heterosexual recipient couples of donated sperm (81% response) accepted participation in the study. In connection with the donation treatment, male and female participants individually completed two questionnaires with study-specific instruments concerning disclosure, genetic parenthood and informational aspects.

RESULTS

About 90% of participants (in couples receiving anonymous donated gametes) supported disclosure and openness to the offspring concerning his/her genetic origin. Only 6% of all participants had not told other people about their donation treatment. Between 26 and 40% of participants wanted additional information/support about parenthood following donation treatment.

CONCLUSIONS

Two decades after the Swedish legislation of identifiable gamete donors, recipient couples of anonymously donated sperm and oocytes are relatively open about their treatment and support disclosure to offspring. Recipient couples may benefit from more information and support regarding parenthood after gamete donation. Further studies are required to follow-up on the future parents' actual disclosure behaviour directed to offspring.