Transcript Dia 1 - Medisch Centrum Kinderwens

The Dutch donor data
fertilization Act
introduction and results
Pim M.W. Janssens
Leiderdorp 4 October 2013
Dept. of Clinical Chemistry and Haematology / Semen bank
The original ideas
the history
• Well meant ideas
• Facts, arguments, feelings, suppositions (DI
is difficult to investigate)
• Process towards Law: 1993 - 2002
2
Knowing where your talents
come from ……
3
The debate
the fears
 No more donors recruited …
 No semen banks left …
 No help for parents …
 Thread for parents …
 Fullfills no need for offspring … ?!
4
The contents:
rights, obligations
 Child has the right to know
donor when older than 16
the ‘roots’
 National Register (only for
the kids …)
 Obligation to register donors and deliveries (by
professionals)
5
curiosity about donor characteristics
wanting to know donor personally
reserve possibility for
later knowing donor
curiosity about siblings
wishing (donor) relatives for child
confrontation with infertility
wanting more children
preconception
pregnancy, birth
seek adoption or
gamete or
embryo donation
childhood
try for another child
from same donor
wanting bond with donor
wanting no family secret
donor child adolescence
tell child about donor conception
use open identity donor
confrontation
emotions
considerations
child adulthood
make contact with donor
register at family matching
service or donor registry
contact donor siblings
keep contact with donor siblings
keep contact
with donor
decisions
and
actions
 time
A revolution in decision making for parents and children
Janssens, Human Reproduction 2009
Consequences for the donors …
• Some are interested in their offspring, some
may feel threated
• More mature characters
• They have no interests in DI ……
→ they can always just stay away …
7
Dutch figures over time
1990
1997
2003
Pregnancies
hetero couples
lesbians
singles
Donors
Semen banks
2008
550
125
50
241
240
187
180
917
589
290
185
21
13
14
12
→ more singles and lesbians
→ waiting lists …
8
2005
10
2010
170
8
No
Changes all because of this very
Act?
There also came, among others:
 Novel opportunities with IVF-ICSI
PESA/TESE, PGD (less hetero couples)
 Changes in society
tolerance, homosexual marriage, fewer taboos,
openness (more lesbian couples and singles)
 and …
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…
and
More stringent norms on Safety and
Quality
2004/23/EC, 2006/86/EG, 2006/17/EG, WVKL
 Huge increase of regulations, sometimes
unrealistic (e.g. on air quality)
 Documentation, risk management, audits,
accreditation
10
nobody wants to end like this …
11
Ongoing sub-debates
 Kids per donor (or families)
→ Gezondheidsraad 3 Sept. 2013: 25 kids per donor …
 National registry: unused opportunities …
 Retrieving old donor data (before Law of 2004)
 Disclosure by parents: incomplete and complex
(Indekeu et al, 2013)
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Sub debates
How many offspring per donor?
Janssens et al,
Human Fertility 2011
13
Ongoing sub-debates
 Kids per donor (or families)
→ Gezondheidsraad 3 Sept. 2013: 25 kids per donor …
 National registry: unused opportunities …
 Retrieving old donor data (before Law of 2004)
 Disclosure by parents: incomplete and complex
(Indekeu et al, 2013)
→ strongly biased data (e.g. DSR -based publications:
respondents wish open-identity donors, longing desires …)
14
Consensus - ever, never?
different stake holders have different interests & views
Party
Interest
 Donors
-> no liability, freedom to stay away
 Recipients
-> fulfill child-wish, healthy offspring
 Offspring
-> loving parents, knowing genetic roots
 Professionals
-> provide requested help, run the service
 Society, politics -> enable & regulate ethically sound system
conflicting
15
interests
Now, in 2013:
what became true of the fears
 No more donors
-> less, but affordable …
 No semen banks left
-> less, but manageable …
 No help for parents
-> affordable … (note: use of escapes)
 Threads for parents
-> for some, not for all …
 Offspring: little wish
-> many want to know donor (main
for knowledge …
16
motive: curiosity)
Modern people have multiple
opportunities
and escapes
 Private initiative and choices, resulting in:
 Crossing the border (reproductive tourism)
 The internet
 International gamete transport
17
Dutch patients treated in Belgium
Sperm donation
250
Oocyte donation
Number of patients
200
Embryo donation
150
IUI partner
IVF own gametes
100
ICSI ejaculated sperm
50
ICSI non-ejaculated
sperm
PGD
0
2003
2004
2005
2006
2007
Pennings, Human Reproduction 2009
18
What decides the choosing?
Recipients:
Safety and trust (based on right or wrong perceptions
on waiting lists, scarcity, quality of care etc)
versus
Freedom to arrange all oneself and
evasion of regulations (e.g. anonymous donors)
19
Donor motives regarding the formal
versus informal setting
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(Woestenburg et al. 2012)
Reasons for donation via the internet
for formal setting:



legally and physically protected
evading paternal feelings and social consequences
standardized procedures in efforts and finances
for informal setting:





possibility to choose a recipient
Having a bond with recipient
having contact with donor child
no rules and regulations
institutions are impersonal
Bossema et al. , 2013, Woestenburg et al. 2012
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Statement
knowing that reproduction is a strong desire:
Ultimate regulation of sperm donation is
illusory
Donors and recipients will always try and
manage to arrange things their own way
(via the informal circuit)
the challenge is a reasonable balance
22
Roel van Kooij
 NBVKI board member2005-2012
Kooij, Kooi,
Kooijed?
(gekooid?)
restricted
by formalities?
23
MCK
24
Reproductive Medicine
an endeavor, a task, a job
Roel van Kooij
An escape from the
formal circuit
into the
(free) world …?
26
The end
 The end
 end