Research
DONOR SIBLING REGISTRY RESEARCH
January 2010: Our abstract "The Case for Comprehensive Medical Testing for Gamete Donors", has been presented at the British Fertility Society meeting, Bristol, UK. This talk, as well as "Survey of 158 Former Sperm Donors" are accepted for presentation at the 3rd Congress of the Asia Pacific Initiative on Reproduction (ASPIRE 2010), April 2010, Bangkok, Thailand.
We were also invited to present this talk at the November 2009 3rd Asia Pacific Congress on Controversies in Obstetrics, Gynecology & Infertility (COGI) in Beijing and the 1st International Congress in Cryo preservation of Stem Cells, Reproductive Cells, Tissue & Organs (CRYO), which will take place in Valencia, Spain on April 22-25, 2010. We were also invited to present both talks at the ESHRE campus on Artificial Insemination which was held in Genk (Belgium) 12/09.
Participate in current research!
October 2009: Hello donors!
Survey for donors:
http://www.surveymonkey.com/s.aspx?sm=tKA_2bB9T_2bPBXER4yIjm_2fUMQ_3d_3d
Prior Research:
Offsprings' experiences of searching for and contacting their donor siblings and donor.
Jadva, V., Freeman, T., Kramer, W. and Golombok, S. (2009)
RBM online, in Press. October 2009
Abstract
Aim:
This study investigates the new phenomenon of individuals conceived using donor insemination searching for and contacting their donor and/or 'donor siblings' (i.e. donor offspring conceived by the same donor).
Method:
On-line questionnaires were completed by members of the Donor Sibling Registry (DSR); a US based worldwide registry that facilitates contact between donor conception families who share the same donor.
Results:
165 donor offspring aged from 13 to 61 (mean = 22) completed the survey. 92% were searching for either their donor siblings or their donor. Whilst overall, the most common main reason for searching for donor relations was curiosity, significant differences were found between adult (aged over 18) and adolescent (aged 13-18) offspring. Adult offspring were more likely to state medical reasons and reasons relating to gaining a better sense of identity and family history, whilst adolescent offspring were curious about similarities with their donor siblings and donors. Some offspring had discovered large numbers of siblings (maximum = 13). The large majority of offspring who had found their donor siblings or their donor reported positive experiences of making contact.
Conclusion:
Donor offspring are searching for and contacting their donor relations. When these relationships are formed, they largely lead to positive experiences. These findings have wider implications because, with the removal of donor anonymity in many places (including the UK and the Australian State of Victoria), it is likely that an increasing number of donor offspring will seek to contact their donor relations in the future.
Early Disclosure of Donor Paternity May Evince Lesser Negative Response in Offspring
(Apr 28/09. IVF News Direct)
http://www.ivfnewsdirect.com/?p=464
In one of the first studies comparing the feelings of donor-conceived
children and adults, researchers from the Cambridge University have found that disclosure of donor paternity at an early age lowers the likelihood of negative reactions from the offspring. The study findings published in the recent issue of Human Reproduction provides new perspectives regarding the response of the offspring depending on the age at which their biological origin is disclosed.
Donor conception, one of the oldest approaches in infertility treatment, is commonly used to treat heterosexual couples, lesbian couples, and single women wanting to conceive. Despite the widespread use of donor conception, the majority of children and adults conceived through this procedure are unaware of their genetic origin, owing to the traditional practice of secrecy. However, an increasing trend towards openness has encouraged researchers to explore the impact of disclosure on the offspring.
Vasanti Jadva, from the Faculty of Social and Political Sciences, Centre for Family Research, University of Cambridge, UK, and colleagues conducted the new study which evaluated the difference in responses of children and adults, when informed about their genetic origin. The scientists analyzed the data obtained from anonymously completed online questionnaires by 165 members aged between 13 and 61 years, of the Donor Sibling Registry (a US-based worldwide registry). The feelings of the offspring towards their parents and about being conceived using a donor¹s sperm were noted.
The study results showed that, compared to offspring of heterosexual couples, those of lesbian couples and single mothers received information about their donor conception at an earlier age. It was also noted that the mean age of disclosure was 14 years (reaching a maximum of 50 years), with 19% of the offspring knowing about their paternity after the age of 18 years and 30% before 3 years of age. Also, 38% of the offspring did not recall the exact age of disclosure since they were too young to remember.
A higher incidence of negative feelings was reported among individuals who received information about their origin in adulthood compared to those who were informed about it during childhood or adolescence. The offspring of heterosexual couples had a higher probability of feeling angry at their mother rather than the father, for lying. It was also noted that sympathy was the most common feeling of the offspring towards their father.
In an earlier research, Lycett, et al. (Fertility and Sterility, 2004)evaluated the impact of donor insemination and its disclosure on the quality of family relationships and children¹s socioemotional adjustments in the families. The study, involving 46 families with a donor-conceived child aged between 4 and 8 years, examined the data obtained through interviews and questionnaires from parents, teachers, and children. The scientists found that the children who were informed about their genetic origin were significantly less argumentative with fewer conduct problems, compared to those from the non-disclosing families. The results also suggested that the parent-child relationship in the disclosing families were more positive compared to the non-disclosure group. Although the findings did not indicate dysfunctional relationships in the non-disclosing families, it illustrated the benefits of revealing the parental genetic identity.
The issue of divulging the nature of conception (using gamete or embryo donation or surrogacy) to children has been extensively debated over the years. With the growing concern about the probable adverse effects of maintaining secrecy, such as alteration in the family relationships or the psychological well-being of the offspring, there is a change in international practices towards encouraging disclosure. In accordance with this trend, the Ethics Committee of the American Society for Reproductive Medicine (ASRM), which recommended anonymous sperm donation in 1993, amended its guidelines in 2004 to support disclosure of the use of donor gametes to offspring. Similarly, in the UK, the legislation now discourages the practice of anonymous donation by providing the right to information about donor identity to the offspring (for those conceived after April 2005) upon reaching 18 years of age.
The current study, reporting a higher incidence of negative responses from offspring informed about their donor paternity in adulthood than during childhood or adolescence, suggests that parents using assisted reproduction should reveal the nature of conception to their children at an early age. However, further studies are necessary to accurately assess the psychological consequences of such disclosure.
References
1. Jadva V, Freeman T, Kramer W. The experiences of adolescents and adults conceived by sperm donation: comparisons by age of disclosure and family type. Hum Reprod. 2009; doi:10.1093/humrep/dep110.
2. Lycett E, Daniels K, Curson R, Golombok S. Offspring created as a result of donor insemination: a study of family relationships, child adjustment, and disclosure. Fertil Steril. 2004 Jul;82(1):172-9.
3. MacCallum F, Golombok S. Embryo donation families: mothers¹ decisions regarding disclosure of donor conception. Hum Reprod. 2007 Nov;22(11):2888-95.
4/09 Published in Human Reproduction:
Jadva, V., Freeman, T., Kramer, W. and Golombok, S. (2009) The experiences of adolescents and adults conceived by sperm donation: Comparisons by age of disclosure and family type. Human Reproduction, 24, 1909 - 1919
BACKGROUND: This study presents findings from a large sample of donor offspring who are aware of the nature of their conception. Importantly, this is one of the first studies to compare the views of offspring told of their origins during childhood to those who found out during adulthood.
METHODS: Online questionnaires were completed anonymously by donor offspring who were members of the Donor Sibling Registry, a US-based worldwide registry that helps donor-conceived individuals search for and contact their donor and donor siblings (i.e. half-siblings). Data were obtained on offspring’s feelings about being donor conceived and their feelings towards their parents.
RESULTS: Offspring of single mothers and lesbian couples learnt of their donor origins earlier than offspring of heterosexual couples. Those told later in life reported more negative feelings regarding their donor conception than those told earlier. Offspring’s feelings towards their parents were less clear, with some of those told later reporting more positive feelings and others reporting more negative feelings. Offspring from heterosexual-couple families were more likely to feel angry at being lied to by their mothers than by their fathers. The most common feeling towards fathers was ‘sympathetic’.
CONCLUSIONS: Age of disclosure is important in determining donor offspring’s feelings about their donor conception. It appears it is less detrimental for children to be told about their donor conception at an early age.
Full Text:
http://humrep.oxfordjournals.org/cgi/content/full/dep110?
ijkey=j90VVnpeCb5VeYK&keytype=ref
PDF:
http://humrep.oxfordjournals.org/cgi/reprint/dep110?
ijkey=j90VVnpeCb5VeYK&keytype=ref
2/09 Published in Human Reproduction:
Gamete donation: parents' experiences of searching for their child's donor siblings and donor.
Human Reproduction, volume 24, issue 3, pages 505-516;
doi:10.1093/humrep/den469
http://www.oxfordjournals.org/eshre/press-release/freepdf/den469.pdf
2009: Presented at the "Fertility 2009" Conference in Edinburgh Scotland January 2009 at the ESHRE Conference in Amsterdam July 2009, invited to present at 8th Annual Meeting of Mediterranean Society for Reproductive Medicine, May 2009 AND 9/09- just published in Human Reproduction!
Here are the free-access links to the online article (cut and paste the entire 2 lines)
Abstract:
http://humrep.oxfordjournals.org/cgi/content/abstract/dep309?
ijkey=cGrcQgqwbOI2dWz&keytype=ref
Full Text:
http://humrep.oxfordjournals.org/cgi/content/full/dep309?
ijkey=cGrcQgqwbOI2dWz&keytype=ref
PDF:
http://humrep.oxfordjournals.org/cgi/reprint/dep309?
ijkey=cGrcQgqwbOI2dWz&keytype=ref
The full citation for your article is:
US oocyte donors: a retrospective study of medical and psychosocial issues
W. Kramer; J. Schneider; N. Schultz
Human Reproduction 2009; doi: 10.1093/humrep/dep309
Title: Long-term follow-up of 155 anonymous egg donors
Jennifer P. Schneider, M.D. and Wendy Kramer B.A. and Natalie Schultz M.D
This study presents findings from a large sample of egg donors recruited from the Donor Sibling Registry (DSR), a US-based registry that helps to educate and support egg and sperm donor families, as well as facilitate connections between half siblings and/or donors. An online survey asked about medical complications and subsequent health problems, contact with IVF clinic, willingness to have contact with recipient families, donors’ satisfaction with the donation process, and current feelings.
Results were based on 155 women <1 to 22 years (mean, 9.4+-5.2 years) past their first donation, which occurred at a mean age of 26.4. Reported medical complications included 32.6% with some degree of OHSS and 4.9% with subsequent infertility. Only 3.9% had been contacted by the IVF clinic for medical updates; 34.2% reported medical changes they thought would be of interest to donor children and half had attempted to report these changes to the clinic, with variable results. Many of those who did not report didn’t realize they could or should. The overwhelming majority, 97.4%, were open to contact with recipient families, 2.6% were uncertain, and 0% said no. A common theme was desire to know the outcome of the egg donation. Donors frequently had not sought information because of confusion about the definition of “anonymity” or “confidentiality.”
Conclusions: IVF clinics need to give anonymous egg donors clearer guidelines re asking for outcome information or giving the clinic medical updates to benefit their genetic children. Additional long-term studies are needed to ascertain egg donors’ risks of infertility or cancer.
We presented the following paper at the Fertility Society of Australia Conference on October 20, 2008!
Paper currently submitted for publication:
Sperm and Egg Donors' Experiences of Donating and of Being Contacted by Their Donor Offspring
Tabitha FREEMAN1, Vasanti JADVA1, Wendy KRAMER2, Susan GOLOMBOK1
1 Centre for Family Research, University of Cambridge, UK, 2 Donor Sibling Registry, USA
Abstract
Aim:
This study presents data on the donation experiences of a large sample of sperm and egg donors and is the first to include donors who have been contacted by children conceived using their gametes.
Method:
Online questionnaires were completed by 63 sperm donors and 11 egg donors recruited via the Donor Sibling Registry; a US-based international registry that facilitates contact between donor conception offspring and their donors.
Results:
Donors' main reasons for donating were financial payment and wanting to help others. The age of first donation ranged from 14-42 (mean=26). Although the majority (91%) felt very happy or content about having donated and were comfortable discussing this with others, several concerns were raised. In particular, 30% were concerned about the wellbeing of any children conceived using their gametes and 27% were concerned about not being able to make contact with them. 71% felt it was important to know how many offspring were conceived using their donation, and half wanted identifying information. 31% of donors had been in contact with their offspring, all of whom reported positive experiences.
Conclusion:
The donors in this sample had positive experiences of donating and wished to know about any children conceived using their gametes. Whilst the sample may not be representative of all donors, this study highlights the importance of donors having access to information about their donor offspring and the positive consequences that may arise when contact is made.
July 2008: Press coverage of the ESHRE presentation:
Tell donor children early in life
By Caroline Parkinson
Health reporter, BBC News, Barcelona
Children conceived using sperm donors should be told of their origins at an early age, research suggests.
A Cambridge University team talked to 165 children conceived this way, and found those not told until the age of 18 often felt shock and anger.
But a European reproductive health conference was warned once children know, they may want to seek out their biological parent.
A UK patient group urged parents to be open from children from the start.
Learning of my biological identity at 17 years of age was a traumatic event
Woman conceived using donor sperm
The study is one of the first to compare the views of the offspring of donor insemination told of their origins during childhood with those who only found out in adulthood.
The offspring, aged 13 to 61, were all on the US Donor Sibling Registry, which helps offspring search for their biological parent and any siblings.
The majority live in the US, with 2% living in the UK.
They were all asked to fill out an online questionnaire.
Assimilation
The results showed around 60% of children being brought up in single parent or same-sex parent families were told about their origins before the age of three, compared with just 9% of children of heterosexual parents.
A third of children of children in heterosexual parents only told their children after they turned 18.
Donor offspring who were told after the age of three were asked how they felt when they discovered how they were conceived, with those who were younger excluded as they would have been too young to recall their response.
The earlier someone was told, the better, the study found.
Over two thirds of those told when they were over 18 reported feeling confused, compared to a third of those told when they were aged four to 11.
Similar differences were seen in the numbers who reported feeling betrayed or anger at being lied to, shock and numbness.
A woman aged 30, who found out how she was conceived in her late teens said: "I would have appreciated revelation of this information much earlier in my life.
"Learning of my biological identity at 17 years of age was a traumatic event."
However, a 13-year-old who found out aged four said: "I was so young I don't remember feeling much more than interested and curious."
Dr Vasanti Jadva, of the Centre for Family Research at the University of Cambridge, who led the work, said: "It appears it is better for children to be told about their donor conception at an early age.
"This finding is in line with research on adoption, which also shows that children benefit from early disclosure about the circumstances of their birth."
But she said it was important to recognise that telling children might trigger curiosity about their biological parent, and they may want to contact them."
Olivia Montuschi, of the UK's Donor Conception Network, said: "We advocate openness from the beginning, from before a child reaches five.
"We even encourage talking to babies about how they were conceived, not because they will understand, but so that parents can practice talking about the issue and get used to the language they want to use."
She added: "If parents do it this way, there is no big revelation. It just becomes one of the things a child knows about itself."
Details were presented to the European Society of Human Reproduction and Embryology conference in Barcelona.
Story from BBC NEWS:
http://news.bbc.co.uk/go/pr/fr/-/2/hi/health/7493073.stm
Published: 2008/07/07 10:30:06 GMT
May 2008: We presented a paper at the ESHRE annual meeting in July (European Society for Human Reproduction & Embryology) :
Age of Disclosure and Donor Offspring’s Feelings about Finding Out They were Donor Conceived.
Jadva, V., Freeman, T., Kramer, W. and Golombok, S.
This study presents findings from a large sample of donor offspring who are aware of the nature of their conception. Importantly, this is one of the first studies to compare the views of offspring told of their origins during childhood to those who found out during adulthood. The sample was recruited from the Donor Sibling Registry (DSR): a US-based worldwide registry that helps donor conceived individuals search for and contact their donor and donor siblings (i.e. half siblings).
Conclusions- Age of disclosure is important in determining donor offspring’s feelings about their donor conception. It appears it is better for children to be told about their donor conception at an early age. This finding is in line with research on adoption which also shows that children benefit from early disclosure about the circumstances of their birth.
February 2008: We have completed collecting questionnaires for the Phase 1 of the Donor Sibling Research. Thanks so much to the more than 1200 donors, parents and donor conceived that participated.
We are very excited about this research because it is a groundbreaking and pioneering investigation of what it means for people born of donor conception to search for (and perhaps find) family members with whom they have had no previous contact.
October 2007: We have recently presented a poster of the first (very preliminary) findings of the research at the ASRM meeting in Washington DC. Given the limited space, we did our best to squeeze in as much information as possible. As we continue to review the data, we look forward to writing and publishing several papers.
Cambridge poster from 2007 ASRM meeting (PDF)
Resulting academic papers will be posted in 2008-2009.
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