FINRRAGE - 2010 Legislation Review - National Health and ...

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Dec 12, 2012 (4 years and 4 months ago)

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1

FINRRAGE

Feminist International Network of Resistance to

Reproductive and Genetic Engineering



The Honourable Peter Heerey QC


Legislation Review

National Health and Medical Research Council

GPO Box 1421

Canberra ACT 2601


Review2010@nhmrc.gov.au

Dear Judge Heerey,

The Feminist International Network of Resistance to Reproductive and Genetic
Engineering (
FINRRAGE

Australia)
1

welcomes the opportunity to make a Submission
to the Review of the Operation of the
Prohibition of Human Cloning for Reproduction
Act 2002

and
Research Involving Human Embryos Act 2002.


On 30 September 2006, we
sent a detailed Submission
to the
Senate Co
mmunity
Affairs Committee
on
the

Prohibition of Human Cloning for Reproduction and the
Regulation of Human Embryo Research Amendment Bill 2006.


For this reason, we

will not repeat all our arguments

here
, but instead provide you
with a Summary of our main
concerns.


Please do not hesitate to contact us if you
require more information
.


Yours sincerely,




Dr Renate Klein

FINRRAGE

(Australia)



c/o PO Box 920

North Melbourne Vic 3051

P
hone:
0438 00 29 79

Email
:
renate.klein@bigpond.com.au




1

FINRRAGE (Australia) is part of international FINNRAGE which has been in existence
since 1985 with critical feminist assessments of
reprogenetic technologies

in a
n international
context (see www.finrrage.org).


2

FINRRAGE (Australia)
: SUMMARY of Concerns regarding

the
Prohibition of Human Cloning
for Reproduction Act 2002

and
Research Involving Human Embryos Act 2002


1.
The Fa
i
lure of
Em
bryonic
Human Stem Cell Research


The last
nine

years hav
e not been kind to stem cell re
searchers
, both in Australia and overseas
. Of
all their promised cures for debilitating diseases through
human
embryonic
stem cell
(hES)
research


and especially thro
ugh somatic cell nuclear transfer (S
CNT)
research

permitted after
the 2005/6 revision of the Act


none have eventuated.



In 2002, the Australian Government endorsed Monash University’s Australian Stem Cell Centre
(ASCC) as its Biotechnology Centre of Exc
ellence. The government granted the A
SCC the
stately sum of $ 115 Million

(
until 2011
)
.
Taxpayers might have expected

the ASCC to provide
some of the promised ‘miracles

cures
’, but
they have been disappointed.


Instead, modest successes from research on adult stem cells and, since 20 November 2007,
induced pluripotent stem cells (iPS cells), appear to have made embryonic
stem cell research
-

and
especially SCNT research
-

red
undant. We are tempted to use a certai
n

Australian politician’s
words

to declare it ‘dead, buried and cremated’.
Even Alan Trounson, former ASCC director
and
hES champion
and now Director of the Californian Institute of Regenerative Medicine (CIRM)

in
California, declared in a radio interview
on a visit to Australia in 2009 that induced pluripotent
stem cells (iPS cells) will make the need for human embryonic stem cells (hES) unnecessary
(quoted in Skene 2009).


Whilst
we wait to see the long
-
term success of both adult stem cell and iPS

cell

re
search,
they do
have one big advantage:
there is no need for women to provide eggs
.
SCNT cloning had already
lost much of its shine in 2005 with the revelations
that
Dr Hwang Woo
-
suk in South Korea
had
fak
ed

SCNT stem cell lines and ha
d

a large number
of h
is own junior female researchers
‘agreeing’ to ’donate’
2

their eggs. Hwang used a staggering 2061 eggs fr
om 129 women (in
Sexton 2006, p.

15)

-

almost 16 eggs per woman.


We will now turn to

FINRRAGE’s main concern with
hES and especially
SCNT research
:
the
danger

it poses to young women who
are asked
to ‘donate’ the required ‘good quality’ egg cells.


2. The dangers of egg provision for (young
)

women

Since the 1980s
,

FINRRAGE has asked, again and again, for studies about the drugs used in IVF
and associa
ted technologies on women’s health.
Shamefully, n
one have been forthcoming despite
the NHMRC 1995 recommendations in its report:
Long
-
term effects on women from assisted
conception
, to undertake a study of the health of women who went through IVF

(NHMRC,
1
995)
.


Thus women who are asked to ‘donate’ eggs do this in the absence of any
peer
-
reviewed

studies.
However, women’s health activists from around the globe
have witnessed and written about

many short
-

and long
-
term dangers to women’s health

from these technologies
, especially drugs
.
3




2

The word ‘donate’ is a misnomer. Egg provision is a lengthy and dangerous process that
involves both drugs and surgical extraction. It is very different from the donation of sperm.
Hence our use of
inverted

commas.

3

An excellent overview of adverse effects from IVF and associated technologies can be
found in Diane Beeson and Abby Lippman (2006) ‘Egg harvesting for stem cell research:

3

Ovarian Hyperstimulation Syndrome (OHSS) is the most da
maging short
-
term health risk.
It can
lead to strokes and even death.
In her award
-
winning 2011 documentary ‘Eggsploitation’
,

US
filmmaker and President of

t
he Center of Bioethics and Culture Network,
bioethicist
Jennife
r
Lahl
summarises these risks in an interview with Melinda Tankad Reist
(<http://melindatankardreist.com/2011/03/egg
-
donation
-
%E2%80%98fulfilling
-
one
-
woman%E2%80%99s
-
dream
-
at
-
the
-
expense
-
of
-
a
nother%E2%80%99/>):


Short
-
term risks of ovarian hyperstimulation syndrome (OHSS) which can be mild,
moderate or severe cannot be underestimated and pose a real danger to the health of the
egg donor. There is a risk of infection and bleeding related to har
vesting the eggs. One
woman in the film suffered a major brain stroke, another had a torsioned ovary requiring
its removal. Another woman had internal bleeding because of a bleeding artery near the
ovary, which went undiagnosed for many hours. She ended up

in intensive care. Longer
-
term risks are associated with cancers (reproductive and non
-
reproductive).
4


We strongly recommend the Review Committee view Jennifer Lahl’s Documentary which not
only shows the exploitation of women in ‘eggsploitation’, but pu
ts paid
to
the defence by
supporters of SCNT research and egg ‘donation’ that the women are adults who can make their
‘informed choice’. We suggest that when there is an absence of peer reviewed studies on health
effects from IVF technologies, no woman, ho
wever intelligent, can make an ‘informed choice’
because, quite simply
,

the medica
l expert

who
recommend
s

this procedure to her does

not have
the research to back up his or her claim that egg ‘donation’ is safe.



We also strongly concur with L
ahl’s point
that egg ‘donation’
commodifies women as they are
only seen as ‘raw material’ for research.


3. Payment for Eggs?

In the light of the above

mentioned two

points,
1. T
he failure of human
embryonic
stem cell
research
,

and

2. The dangers
of egg provision for (young) women,
we are more than puzzled
to hear that there is a move amongst some peo
ple to have the Act changed

so that payment for egg
‘donors’ will be able to occur. Indeed, we are
quite taken a
back that Professor Loane Skene

wh
o has publicly raised this
question

(s
ee Skene, 2009) is a Member of
this Review Committee. It
is our strong hope that Profe
ssor Skene will absent herself
from any discussions on this topic
during the Review Process so as not to
influence other Committee M
embers
.


Apart from our arguments made
above,

we will further
argue

that there is no
demonstrated
demand

for egg cells by Australian researchers, as the few issued
Embryo Research L
icenses
show (see 4. below)
. Apart from this, we kno
w from countries where
payment

for egg cells is
legal that it is overwhelmingly poor women who ‘volunteer’ for egg provision
as it supplements
their often meagre income. This has be
en particularly well documented
for

Eastern European
countries

(e
.
g
.

Romania)

where UK fertility c
linics access local poor women and buy their eggs
(
European Parliament, 2005
). There are poor women in Australia too


and due to rise because of
poor immigrants and
financial woes associated with the 2011 floods and cyclone


surely no self
-
respecting go
vernment could agree to further exploitation of
already
marginal citizens.






medical risks and ethical problems’.
Reproductive BioMedicine Online
, 13,
pp. 573
-
57. See
also George (2008) and Klein (2008).


4

These cancers include ovarian, uterine, endometrial and breast cancer. Women who ‘donate’ eggs can also
lose their own fertility.



4


4. Cloning Licenses

After the 2006 Amendments to the Act that allowed for SCNT research, one would
have expected to see an explosion of applications for SCNT research as its promoters
had
pleaded with

the Australian public that they were desperate to engage in such
‘live savi
ng’
research for which ‘fresh’ egg cells
from
healthy and fertile women

were
needed (with only one set of chromosomes which is different from
two sets in
left
-
over fertilised IVF embryos).


However, as
of
31 March
2009, only 3 out of 10
human
embryo resea
rch licenses
use
d

SCNT research
.
The NHMRC’s 2008
-
200
9 Embryo Research Licensing Report
show
ed

that the
3

SCNT projects
were

all from Sydney IVF.

1080 ‘other

embryos


were
allowed to be created

for the whole life of the
3
projects
.
Of these,

to the end of
March 2009, 7 ‘other’ embryos
had
been
created but without producing any
reproducible
embryonic stem cell lines (the longest development was an 8
-
cell stage
blastocyst).


The latest NHMRC Report that covers the period from
1 March

to
31 August

2010
shows 9 current licenses

(8 from Sydney IVF, 1 from Melbourne IVF)

and

3

SCNT
projects, all from Sydney IVF.
Out of the permitted

use of
1640 excess ART embryos
,

527 had been used during the life of the project
s

(46 in the 2010 reporting period).


T
urning to the 3
current
SCNT projects, w
e are astonished by t
he high number of
2400 eggs
permitted to use
in each project (7200 total)
and wonder who decided on
this high number and for what reason.



The 2010 NHMRC Report states that a total of 389 eggs h
ave already been used for
these 3 SCNT projects (p. 10) (64 in the reporting period) and

that they were all
clinically unsuitable eggs

(p. 7 and 8; used in License Number 309712 and 309714,
both from Sydney IVF).
5



And the allowed creation of
1080
‘other

embryos


in the 3

SCNT projects we
find
extraordinarily

high.

Again we ask: who decided on this number and why? In
total, 32
‘other embryos’ have been created (11 during the
last
reporting period).
As in 2009,

the longest development was an 8
-
cell stage b
lastocyst

and
no
reproducible
embryonic stem cell lines
have been

created.


It is unclear
whether the 389
clinically unsuitable eggs

resulted in the
‘other embryos’

-

32 so far
-

listed on the same page of the report (p. 10)
. As there is no mention of
women ‘donors’ in th
e Report, should we assume
that so far
,

no specifically ‘donated’
eggs from women who were not undergoing IVF have been used
?

S
urely
,

if

eggs
from women providers rather than
‘unsuitable eggs’ (presumably from IVF)
had been

used,
this w
ould be noted in the NHMRC’s Licensing Committee reports? Surely,



5

Interestingly, the ASCC never had an embryo research license: so much for the Key
Centre’s
alleged
preeminent position in Australia’s human stem cell scie
nce (and taxpayers’
mo
ney).


5

there would be comments on their state of health during and after said egg provision
?
6

So, we wonder what exactly is the raw material for the
se

32 ‘other embryos’?


In sum, with
only 9

current embryo research licenses, 8 granted to Sydney IVF and
1

to
Melbourne IVF
-

and
no

reproducible
human embryonic stem cells from the 3 SCNT research
projects
-

w
e suggest that at the least any
present and future
SCNT research projects be
abandoned
.


5. Recommendations
7

• As we have shown above,

SCNT research projects in Australia have not
led to
reproducible
embryonic stem cell lines
, let

alone ‘miracle cures’. This research
should be abandoned and
declared ‘dead, buried and cremated’.


• Failing to stop SCNT research projects, we suggest
a drastic

reduc
tion in
the number of ‘other
embryos
authorised to be created’ and restricting them to be

transparently

made from

‘clinically
unsuitable eggs’
from women already undergoing IVF
.
8


• If

egg

cells
are already (or will be in future)

‘harvested ‘ from
non
-
IVF

patients
-

healthy young
women
-

the NHMRC Research Licensing Committee
has an obligation to

demand a detailed
report
of
all

drugs used,
the
extraction p
rocedure, and any complications
.
Mo
reover, the woman’s
health must be monitored following
egg provision

and if there are long
-
term effects, then life
-
long
free health care (paid for by the r
e
searchers) should be mandatory.

All of this needs to be
documented

in the
Licensing
Committee’s
ongoing Reports.


• The Reports from the NHMRC Research Licensing Committee have to become more
transparent and clearly specify the source of the egg cells used for ‘other embryos’.


• Payment for egg ‘donation’
must

remain prohibited.




We urge the NHMR
C to finally deliver on its 1995 promise and begin retrospective studies of
the health of women who underwent IVF since its beginnings in the late 1970s.










6

Other potential sources of human eggs are ovaries that
may
become availa
ble when a
woman undergoes a total hysterectomy. Researchers have also suggested that unripe eggs
from the ovaries of aborted foetuses could be matured in the laboratory and then used for
research. We presume, however, that
in good faith
the NHMRC report w
ould have listed
such

sources.



7

We also remain opposed to the creation of animal /human embryos which we consider
highly unethical

and dangerous
.



8

Given the health risks involved in IVF we certainly do not endorse its practise. However,
since women w
ill continue to submit to IVF and there will be many eggs extracted that are
‘unsuitable’ for fertilisation, their use in (futile) SCNT projects is preferable to the
exploitation of non
-
IVF patient providers.


6

References

Beeson, Diane and Abby Lippman
. 2006
. ‘Egg harvesting for stem cell research:
medical

risks and ethical problems’.
Reproductive BioMedicine Online
, 13, pp. 573
-
57.


European Parliament. 2005.

Resolution on the trade in human cells
’.

P6_TA 0074
Planned egg cell trade [2005]OJC320#, p. 251.


George, Katrina. 2008. ‘Women as collateral damage: A critique of egg harvesting for
cloning research.
Women’s Studies International Forum
, 31(4), pp. 285
-
292.


Klein, Renate
. 2008
. ‘From test
-
tube women to bodies without women’
Women’s
Studies
International Forum
, 31(3), pp.157
-
175.


Melinda Tankard Reist.
March
2011
.

‘Eggsploitation: a devastating case against the
commodification of women and eggs’,

Interview with Jennifer Lahl

<http://melindatankardreist.com/2011/03/egg
-
donation
-
%E2%80%98fulfi
lling
-
one
-
woman%E2%80%99s
-
dream
-
at
-
the
-
expense
-
of
-
another%E2%80%99/>


National Health and Me
dical Research Council

(NHMRC). 1995.
Long
-
term effects
on women from assisted conception
.

Commonwealth of Australia: Canberra.


National Health and Medical Researc
h Council (NHMRC). 2009. ‘NHMRC Embryo
Research Licensing Committee. Report to the Parliament of Australia.’
1 October
2008 to 31 March 2009,
http://www.nhmrc.gov.au
, Commonwealth of Australia:
Canberra.


National Health and Medical Research Council (NHMRC). 2010.

NHMRC Embryo
Research Licensing Committee. Report to the Parliament of Australia.


1 March 2010
to 31 August 2010
,
http://www.nhmrc.gov.au
, Commonwealth of Australia: Canberra.


Sexton, Sarah. 20
05/updated 2006. ‘Transforming “Waste” into “Resource”: From
Women’s Eggs to Economics for Women’. The Corner House, UK.

Skene, Lo
a
ne.
17 November,
2009.
‘Why not pay women to donate their eggs for
research?’
<
http://www.theage.com.au/opinion/society
-
and
-
culture/why
-
not
-
pay
-
women
-
to
-
donate
-
their
-
eggs
-
for
-
research
-
20091117
-
iijo.html
>

(accessed 15 March
2011)
.