Results of the 2012 evaluation of the Dutch Donor Data Act (Wdkb)

1. Results of the 2012 evaluation of the Dutch Donor Data Act (Wdkb) Wybo Dondorp, dept Health, Ethics & Society, research schools CAPHRI and GROW Maastricht University

3. Evaluation of legal instruments in health care and public health • Since 1997, ministry of Health (VWS) • Neth Org Health Res and Dev (ZonMw) • Results may occasion revision of rules/ regulations or other policy measures • Addressees may include other parties, e.g. independent governing bodies or professional societies

4. Format • General framework for evaluation: consistency, legal security and legal protection, effectiveness and sustainability • Multidisciplinary group combining empirical and legal research • (international) legal comparison • Singular or thematic (eg. Legal competency and representation)

5. Evaluation of “Donor Data Artificial Fertilisation Act” (Wdbk) • Act 2004, first evaluation, together with (second) evaluation Embryos Act • Research group • Groningen: Heinrich Winter & ‘Pro Facto’ (emp part) • Amsterdam: Johan Legemaate & Corrette Ploem (legal) • Maastricht: Guido de Wert & Wybo Dondorp (ethics) • Interviews,questionnaires, literature, legal and ethical research • Report September 2012

6. Wdbk • Service providers obliged to collect and register donor data as from 1 June 2004 • Central digital registration system • Provision of donor data to stakeholders on their request • Transition provision: before 1 June 2020, identifying data will not be released without the donors consent • Whole system managed by Foundation (Sdbk)

7. Donor data • Medical (condns relevant for healthy development) • only to GP on request

8. Donor data • Medical (condns relevant for healthy development) • only to GP on request • Physical (length, weight, colour of skin, eyes, hair, hairtype), social (education, profession, age, civil status) & personal (donor’s description of character) • to child ≥12yrs • to parents of child <16 yrs; with knowledge of child ≥12yrs

9. Donor data • Medical (condns relevant for healthy development) • only to GP on request • Physical (length, weight, colour of skin, eyes, hair, hairtype), social (education, profession, age, civil status) & personal (donor’s description of character) • to child ≥12yrs • to parents of child <16 yrs; with knowledge of child ≥12yrs • Identifying: full name, date of birth, residency • To child ≥16yrs who knows/suspects to be donor conceived • Donor must be asked to consent, but refusal can be overruled if interests of the child are deemed weightier

10. Sdbk • Foundation’s main tasks: • maintaining the system, preserving the data 80 y • providing donor data on request to designated stakeholders • obtaining donor consent for provision of identifying info; deciding in cases of refusal • providing support in connection to provision of donor data • providing information about the system

11. Effect of Act

12. Waiting lists • waiting period max 3 yrs • 4/8 sperm banks have no waiting list • 2/8 1½ yrs; 2/8 ≥ 3 yrs

13. Waiting lists • waiting period max 3 yrs • 4/8 sperm banks have no waiting list • 2/8 1½ yrs; 2/8 ≥ 3 yrs • Alternative routes • Known donor • Internet • Finding a donor abroad

14. Practical application of the Wdkb • Data base: • remaining problem is data from before the coming into force of the Act • Some centres have not registred due to a difference of interpretation of ‘donor’. • Inspectorate should become active

15. Data Provision on request

16. Protocol requests ident data pre 2004 • Separate talks with donor and child by professional • who then decides no risk/ small risk/ danger: high risk of serious harm (in case of contact) • Options: provision/ provision & couns offer/ recomm to retract / non-provision

17. Protocol requests ident data pre 2004 • Separate talks with donor and child by professional • who then decides no risk/ small risk/ danger: high risk of serious harm (in case of contact) • Options: provision/ provision & couns offer/ recomm to retract / non-provision • =at odds with the Act (provision unless opposed by weighty interests of the donor; interest of the child is not a ground for refusal)

18. Protocol requests ident data pre 2004 • Separate talks with donor and child by professional • who then decides no risk/ small risk/ danger: high risk of serious harm (in case of contact) • Options: provision/ provision & couns offer/ recomm to retract / non-provision • =at odds with the Act (provision unless opposed by weighty interests of the donor; interest of the child is not a ground for refusal) • Recomm: adapt to the Act or argue for revision.

19. Support provided with data provision (& contact) • This is a task of the Sdkb still to be filled in (some cases until now) • Talks to identify expectations about contact, limits to be respected etc

20. Questionnaires Donors/Int P/Parents • NB: low response & bias of internet questionnaires! • The new system seems not to have led to a change of motives. Highest scoring motive is still wanting to help others (75%)

21. Questionnaires Donors/Int P/Parents • NB: low response & bias of internet questionnaires! • The new system seems not to have led to a change of motives. Highest scoring motive is still wanting to help others (75%) • 90% of parents of children >3 has told; 94% of these say they did so without support, of which 83% had no wish for support

22. Questionnaires Donors/Int P/Parents • NB: low response & bias of internet questionnaires! • The new system seems not to have led to a change of motives. Highest scoring motive is still wanting to help others (75%) • 90% of parents of children >3 has told; 94% of these say they did so without support, of which 83% had no wish for support • Of those who didn’t tell, 95% say the child is still too young; 3% do not yet know whether they will tell

23. The lifting of anonymity • does not rest on arguments that would rule other conclusions and policies. • arguments based on data from the context of adoption cannot simply be used also here.

24. Openness • There is a tendency towards more openness, but a large part of heterosexual parents doesn’t tell. • To avoid harm as a result of inadvertent late disclosure, telling early is other things equal the safest course. Not telling is morally risky. • However, other things are not always equal. Parents may have weighty reasons for not telling. Eg. families in cultural context hostile to donor conception. Protection against stigmatization and discrimination

25. Are further legal steps needed? • Further steps eg. marking on birth certificate (Victoria), or ‘letter at 16’. • Lebenslüge? • Risks? • denial of medical information / consanguinity /inadvertent disclosure • Frustrating the intention of the legislator? • Lalos 2007:

26. Aim of the Act • To allow those who are donor conceived to find out about their genetic roots. But what does that mean? • To allow those who know or suspect to find out...? • To ensure that all donor conceived persons know how they were conceived?

27. Aim of the Act • To allow those who are donor conceived to find out about their genetic roots. But what does that mean? • To allow those who know or suspect to find out...? • To ensure that all donor conceived persons know how they were conceived? • No suggestion of the latter interpretation in the Explan Memorandum and Parliamentary History

28. Aim of the Act • To allow those who are donor conceived to find out about their genetic roots. But what does that mean? • To allow those who know or suspect to find out...? • To ensure that all donor conceived persons know how they were conceived? • No suggestion of the latter interpretation in the Explan Memorandum and Parliamentary History • Still a problem?

29. Aim of the Act • To allow those who are donor conceived to find out about their genetic roots. But what does that mean? • To allow those who know or suspect to find out...? • To ensure that all donor conceived persons know how they were conceived? • No suggestion of the latter interpretation in the Explan Memorandum and Parliamentary History • Still a problem? • But for whom? It cannot be the aim of the law to create an identity problem in order to be able to solve this through the regulations of the Wdkb.

30. Mirror donation • Negative position statement NVOG; negative response professionals quest; parliamentaery questions

31. Mirror donation • Negative position statement NVOG; negative response professionals quest; parliamentaery questions • Arguments against MD not convincing • MD at odds with altruistic donation • Unfair because not all couples can be helped • Oocyte dionation is much more burdensome • Benefits! • Legal: requirement in Embryos Act that donation of gametes must be ‘gratis’. NB: cross-over kidney donation programme.

32. Mirror donation • Negative position statement NVOG; negative response professionals quest; parliamentaery questions • Arguments against MD not convincing • MD at odds with altruistic donation • Unfair because not all couples can be helped • Oocyte dionation is much more burdensome • Benefits!

33. Postmortal donation • Some centres do not allow postmortal donation, other centres only for kown donors, or for a general donor used before in the same family.

34. Postmortal donation • Some centres do not allow postmortal donation, other centres only for kown donors, or for a general donor used before in the same family. • The fact that contact will not be possible can be a reason to prefer a living donor; however if postmortal reprod with partner sperm is allowed, it seems strange not to allow postmortal donation • When about oocytes the shortage is too large not to use this source • Informed consent of donor & recipients • Oocytes: also cryopreserved for own use.

35. Recommendations 1 • Centers need to do more in terms of recruitment • Mirrordonation deserves balanced discussion – centers offering this have a responsibility to collect and present data that allow evaluation • Research needed to determine the proportionality of compensation for oocyte donors • Quality of implications counseling for donors needs improvement

36. Recommendations 2 • Need for adequate counseling of parents with regard to telling or not telling without directively enforcing a choice in this regard • Need to elaborate support system • It should be considered to allow donors to be told the number of children conceived • Mandated openness & retrospective lifting of anonymity are to be rejected.