2. Donor-insemination in SMCG/MCK between 1977 and 2003 (Leiden Clinic)

3. DI in the Netherlands: it is time to produce data! How did our population of women asking for DI change in the 1977 – 2003 time-frame; What data do we have about the mothers and the children born in this period; The donors during this time frame, did they react on the discussions in society about anonymity? Medisch Centrum Kinderwens

4. Acceptance of D.I in the mid- seventies First reports on DI in 1948 (Levie) DI for non-married women is to be rejected (Resolution KNMG, 1962) DI for women in an infertile relationship could be tolerated under strict conditions ‘In 1960 in the NL, 90% of all gynaecologists opposed DI as treatment for infertility, in 1970 40% of them still did so’ (Hoogerzeil, 1985). Medisch Centrum Kinderwens

5. Conditional acceptance Non-disclosure about the way of conception from the parents to the child was the prevailing norm. Anonymity until infinity of the donor is the logical consequence. In his 1975 publication for dutch practitioners, Levie elaborated on contra indications for DI. He wrote: … ‘we think that knowledge by any person outside the directly involved medical team about the intention to have DI is a contra-indication to start DI treatment. ’ Medisch Centrum Kinderwens

6. DI in NL : the ‘seventies’ and early ‘eighties’ In 1985 Hoogerzeil writes:’… in the DI program of the AZUA the question of confidentiality was always left for the couple to decide’. At the start of the DI clinic in Leiden Single women and Lesbian couples were welcome from the start in 1977 : confidentiallity has a different perspective in such treatments… Medisch Centrum Kinderwens

9. Heritage of Leiden clinic to MCK fertility centre Medisch Centrum Kinderwens Digitalize old patient files into pdf documents per patient Determine type of data of interest for the database Go through every single patient pdf file to search the data of interest Type the data in the database Control of the quality of the data ( inconsisten t inputs etc) Analyze the data

10. Content of the database Women DI Date of treatment Date of birth Type of relationship Indication Rankno of pregnancy Singleton or multiple Contact Children Date of birth Health Male or female Contact Donors Date of intake Date of birth ‘A’ or ‘B’ Own children Spermdata Linked to pregnancies Other data like smoking, alcohol etc Contact

11. Children born after treatment between 1977 - 2003 Women : 1105 pregnancies leading to a first birth of at least one child; 273 women had two successive births, 26 had three births, in 1 case was even a fourth birth In total 1365 singletons, 47 twins and 2 triplets, adding up to 1465 children. From these 1465 we could record the sex of 1431 children (98%). This is the group under study in this presentation.

12. DI from 1977 and 2003 : 3 periods 1977 - 1984, anonymity and secrecy, insemination partly with fresh sperm and several inseminations per cycle 1985 - 1993, discussions on anonymity and secrecy are opened; insemination mainly with cryopreserved sperm, introduction of IVF. 1994 – 2003, introduction of ICSI (!), trend to voluntary non-anonymous donors, TV-publicity and discussions on secrecy, bill on regulated artificial fertilization passed in june 2002 and became the Law.

13. 3 groups of mothers Mothers in a heterosexual relationship; indication: infertility problem, other;  Mothers in a lesbian relationship; Single mothers

14. Children and their mother’s relationships in 3 periods periodInfertility 2 womenSingle womentotal 1977-19843376656459 1985-199228310191475 1993-2003110187200497

15. Characteristics of mothers during three periods

16. Donors, intake 1976 and 2003 Involved in birth of children Used in inseminations but no births Only intake or not used 24679>200 Nr families per donorNr of children per donor Guidelines 1105/246 = 4,51465/246 = 6,025 CBO, 1992

17. 246 donors involved in pregnancies Anonym (A)Not Anonym (B)Comment Status at intake21630From 1977 upto 2003 Change from A  B 24Mainly in or after 1993 Fixation of A status 4In or after 1993 Reversal of B (B  A) 2Around 2002 Result at this moment 19452

18. Requests for non identifying donor information  Requests of mothers for non-ID info (‘donor pasport’), after birth; Requests of children; Mother and child come with a request Only the child comes with a request Only the mother comes with a request

19. Requests by mothers and children (infertility group)

20. Requests by mothers and children (single mothers) Medisch Centrum Kinderwens

21. Comparison of 2 groups of mothers Medisch Centrum Kinderwens

22. Sex of the children who ask 72 children who requested donor information 30 were male, 42 were female Are girls more inclined to search for this information?

23. Conclusions about disclosure ? - In the oldest group of children with a social father (29 - 36 yrs) only 4% of the children make a request themselves; -In the youngest group (10 – 19 yrs) many more mothers (20% vs 7%) make a request for a ‘donor pasport’ than in the oldest group; -In general mothers are much more active in this respect than children; -In the group without a social father 20 – 30% of the children request for donor info..

24. General conclusions on DI between 1977 and 2003 DI became an accepted treatment mode for infertility and unvolontary childlessness in the Netherlands; Also lesbian relationships and single women as candidates for DI became widely accepted; The landscape in relation to the DI candidates changed drastically : - the ‘classical’ infertility cases now logically prefer IVF or ICSI, if needed in combination with PESA or TESE. - a limited group of severe azoospermia still remains indicated. - single women and lesbian couples are a large group in DI programs Symposium MCK 2013

25. Special Thanks Erica de Reus Anne Brewaeys Medisch Centrum Kinderwens

26. Thanks to many colleagues and staff members from Leiden Clinic Willem Beekhuizen Kees van Schie Hanna Bonink Renske v.d. Baan E. Tellegen J. van de Noort Carla van Gerwen Mirjam Denteneer Maria Noboa Elly van der Kwaak Ingrid Heijnsbroek Lies ter Haar Gerda van Niekerk Jacqueline Heemskerk Maureen Roos Present secretarial staff MCK Present medical staff MCK Present laboratory staff MCK