PVH 20e jaargang – 2013 nr. 1, p. 003
PVH 19e jaargang – 2012 nr. 2, p. 047-053


An Israeli Health Ministry committee has made some radical recommendations about
fertility and birth policies last week, including allowing gay men to use a
surrogate mother to conceive a child. The report was sparked by a 2 year legal
battle by Itay Pinkas and Yoav Arad, a gay couple who went to India to hire
a surrogate. Pinkas, a gay rights activist, requested the Health Ministry allow
them to hire an Israeli surrogate but were denied.The report includes recommendations
for:Extending the legal right to conceive children using a surrogate mother
to gay men and single womenAllowing married men and women to undergo fertility
treatment with people other than their spouses without notifying themRemoving
anonymity from sperm donation so that children can learn the identity of their
genetic father when they reach the age of 18.

Currently, only married couples are permitted to use surrogate mothers.
The report recommends that men gain the right to use surrogate mothers,
but they will not be allowed to use paid surrogates but only “altruistic surrogates”,
women who volunteer to carry a child for free. Shlomo Mor Yosef, who led the
committee, explained the reasoning behind these provisions:”The rationale
behind the limiting of use of surrogates by men was the fear of a major growth
in the number of women forced to become surrogate mothers as a way to mitigate
financial woes,” Mor Yosef said. “We didn’t want the competition
over this ‘limited resource’, surrogate mothers, to become too economically
aggressive, leading to a substantial rise in the price of the process.”
~ The Times of Israel, May 20; Haaretz, May 20


“He’s sick and tired of the pain and indignity and wants to die” is the most common
reason for assisted suicide and euthanasia. However, a thought-provoking
study in the journal PLoS One by researchers from the Universitat
Internacional de Catalunya, in Barcelona, suggests that this statement
raises far more questions than it answers.In the first place,
the wish to hasten death, or WTHD as they call it, is very poorly
defined.“…studies have not distinguished clearly between
a general wish to die, the wish to hasten death and requests for
euthanasia or physician-assisted suicide. Thus, one finds the
indistinct use of terms such as ‘wish to die’, ‘want to die’ or ‘desire to die’,
as well as ‘wish to hasten death’, ‘desire for early death’ ,
and other related expressions or synonyms for requests for euthanasia
or assisted suicide, such as ‘death-hastening request’, ‘request
to die’, ‘request for euthanasia’ and ‘request for physician-assisted suicide’.”
Second, the WTHD can change with time.
Finally, there is a wide range of factors which provoke the WTHD,
including pain, depression, hopelessness, the feeling of being a burden
and loss of autonomy.After synthesising a number of studies of patients
who had asked for their death to be hasten, the Catalan researchers
concluded that “Overall, the WTHD emerges as a phenomenon that
does not necessarily imply the wish to die, and it appears as a response to an
overwhelming emotional distress among patients in the advanced stages of disease.”


There may be an international shortage
of kidney donors, but there is no shortage of creative solutions.
In the latest issue of the American Journal of Bioethics, Paul
E. Morrissey, of Brown University, in Rhode Island, suggests that
both kidneys could be removed from brain trauma patients on life-support.
Afterwards, the patients would be removed from life support and
would die. Two fresh and viable kidneys become available for rapid
transfer to waiting recipients.Life without kidneys is normally
short, but Morrissey argues that the patient is so close to death
that it is reasonable to assume that removal of the kidneys cannot
be described as the cause of death. Hence, the fundamental principle
of transplant surgery is observed, the Dead Donor Rule: that organ
retrieval itself must not be the cause of death. He calls the
procedure premortem donation.The argument could probably be extended
to other organs, one of the accompanying commentaries notes, although
Morrissey is tactful enough not to note this, say, the heart or
the liver.The tricky question is whether the operation causes
death. Morrissey says No:”Medically and legally the donor
would be alive at the time of surgery and would die secondary
to irreversible head injury as some interval after the surgical
procedure. This proposal is therefore unlike proposals for euthanasia
by organ donation or criminal execution by organ donation.
For the donor or donor surrogate facing imminent death, premortem
donation balances the promise of a final altruism against the
exploitation of a vulnerable population.”There are many other
benefits: the hospital staff can work in an orderly fashion; the
family has time to grieve; the public maintains its faith in the
Dead Donor Rule; and live-saving kidneys enter the transplant
This target article in AJOB was praised for its
creativity by some specialist and criticised by others. The authors
of one commentary were scathing: “Bilateral donor nephrectomy
will have catastrophic consequences on survivors of erroneous
prediction of poor neurologic outcome or survival after [withdrawal
of life support]. Morrissey’s proposal violates the Hippocratic
Oath of do-no-harm and the public trust in professional obligations
to serve patients’ best interests.”However, Franklin G. Miller and
Robert D. Truog, two well-known American bioethicists,
believe that the argument is quite sound. They contend that: “Probably
some will oppose the proposal on slippery slope grounds: Procuring
both kidneys premortem is the entering wedge for abandoning the
dead donor rule. Facing the reality of our current practices,
however, makes it clear that the dead donor rule is preserved
only as a fiction.” ~ AJOB, May 31


Doctors in the UK could be banned for
refusing to give unmarried women contraceptives or carry out sex
change operations under new guidelines. The General Medical Council
has issued new draft guidelines saying that it was “discriminatory” for
doctors to deny unmarried women the pill or morning-after pill
because they object to people having sex before marriage.The draft
GMC guidelines, “Personal Beliefs and Medical Practice”,
state that doctors “cannot be willing to provide married
women with contraception but unwilling to prescribe it for unmarried
women. This would be a breach of our guidance as you would be
refusing to treat a particular group of patients”. It would
also be illegal for doctors to refuse to perform “gender
reassignment”, because that would amount to discrimination.
“Serious or persistent failure to follow this
guidance will put your registration at risk,” the guidelines
caution.Former surgeon Dr Peter Saunders, of the Christian Medical
Fellowship, said the rules would “marginalise Christian
health professionals in Britain”. He told the Daily Mail: “The
problem is that 21st century British medicine now involves practices
which many doctors regard as unethical.” Doctors can refuse
some treatments on ethical grounds, including abortions. According
to the guidelines, they must always refer patients to a colleague
who will perform the treatment. The final version of the guidelines
is set to be published later in the year. ~ London Telegraph,
May 23


The president of the Royal College of
General Practitioners in the UK, Iona Heath, has taken a strong
stand against the legalisation of assisted suicide. In an eloquent
article in the BMJ she argues that campaigns in support of assisted
dying rely on an excessively rosy view of society.
First of all, she feels that it will be impossible to draft a
law which protects the vulnerable. “Most of the discussion
of and support for assisted dying revolves around exceptional
individuals who are intelligent, articulate, and facing the prospect
of intolerable suffering and who clearly understand their situation
and predicament. Yet legislation has to protect everyone, including
those who struggle to express or even fully understand what is
happening to them. It seems to me to be impossible to ensure that
an apparently voluntary request for assisted dying is not in some
small way coerced.
”Second, supporters assume that governments
will be generally benign. This is naïve, she says. “A
malign government coming into power with legislation supporting
assisted dying already in place is a deeply disturbing prospect.”Third,
assisted dying is a technical fix to an existential problem. “One
of the huge challenges of human life is to find ways of living
a meaningful life within the limits of a finite lifespan that
will always involve loss of love and the inevitability of grief.
Doctors have a regrettable tendency to ignore this reality and
persist in active and invasive treatment beyond the point at which
it has become futile and even cruel.” ~ BMJ, May 29


UK man Tony Nicklinson has suffered
from locked-in syndrome since he had a massive stroke. He describes
the last seven years of his life as worthless. He has decided
he wants to end his life. He is physically incapable of doing
so — and needs another person to do it for him. Under current
British law this would be classified as murder. While this seems
like just another “right to die” story, Nicklinson,
who can only blink, has discovered Twitter. Technology has made
it possible for Nicklinson to communicate — which he does by
blinking at a computer which turns his thoughts into words. He
made his first tweet on June 13 and has reached almost 200 in
the past two weeks.
An Al Jazeera essay commented on the case,
pointing out that Nicklinson’s newfound ability to speak to anyone
on the internet serves two ends: it promotes the cause of assisted
suicide but it also gives a victim of locked-in syndrome a reason
to live: “So perhaps if there is something to hang on to
in this moral maze it’s this: technology has at least the capacity
to alter peoples’ opinions of themselves, even in desperation:
and that things which until recently were scarcely imaginable
are now facts of life. And if Mr Nicklinson’s mind were to persuade
him that life is still worth living then wouldn’t that be a wonderful
thing?” ~ Al Jazeera, Jun 18


A UK judge has ruled that a 32-year-old
British woman who is dying of anorexia should be force fed in
an attempt to restore her to health. Justice Peter Jackson, of
the Court of Protection, said that the case was a very difficult
one in which the preservation of life was very finely balanced
against “personal independence”.The woman, known only
as E, is a former medical student with several chronic health
conditions, including alcoholism. Her anorexia seems to stem from
sexual abuse she suffered, unknown to her family, between the
ages of 4 and 11. She has been in and out of hospital for physical
and mental conditions for many years. In July and October last
year, she signed advance consent forms stipulating that she did
not want any medical intervention to prolong her life. Her family
supports her wishes. “For us it is the quality of her life
and not the quantity,” they testified. “We want her
to be able to die with dignity in safe, warm surroundings with
those that love her.”Given that the woman appeared to be
aware of her circumstances, and that she did not desire to die,
but nor did she desire to eat, thejudge was very circumspect in
reaching his decision. However, he felt that at the time of drawing
up her advance directives, E lacked capacity to make a rational
judgement. On balance of probabilities, he thought that force
feeding her would do more good than harm, even though it would
deprive her of a relatively peaceful death.
The preservation of life must be accordeda very high value, he said:“All human
life is of value and our law contains the strong presumption that
all steps will be taken to preserve it, unless the circumstances
are exceptional. This principle is reflected in Article 2 EHCR,
which provides that everyone’s life shall be protected by
law. It is the most fundamental of the Convention rights.”Under
the circumstances, it was worthwhile attempting to preserve E’s
life, as long as there was a reasonable chance of success:“We
only live once – we are born once and we die once – and the difference
between life and death is the biggest difference we know. E is
a special person, whose life is of value. She does not see it
that way now, but she may in future. Although extremely burdensome
to E, there is a possibility that it will succeed. Services and
funding will now be provided that were not available before and
it would not be right to turn down the final chance of helping
this very vulnerable young woman.”The case aroused strong feelings
among readers. A comment on the Practical Ethics blog illustrates
the view that the judge had made an horrendous error: “This
is beyond appalling. I am HORRIFIED by the protracted cruelty
this patient has already endured and will not yet again be forced
to endure. It is torture!” ~ London Telegraph, June 15


The French-speaking Swiss canton of
Vaud will become the first canton to introduce a law which explicitly
allows assisted suicide. Last week, 62% of voters supported a
proposal which would oblige hospitals and nursing homes to carry
out the wishes of a person who has requested assistance in dying.
The person must be suffering from an incurable illness and be
of sound mind. It will be up to the head nurse of a nursing home
or a chief physician of a hospital to decided whether patients
meet the criteria. The proposal was supported by Vaud doctors
and nursing homes.A failed counter-proposal by assisted suicide
organisation Exit would have guaranteed people in care facilities
an unconditional right to die. Exit argued that “If the
law imposes an evaluation of the suicide request by a medical
team from the establishment, it is an inacceptable breach of individual
liberty and a form of institutional paternalism.”
Karim Boubaker, head of Vaud’s public health services, opposes Exit’s
demand to change the responsibilities of nursing homes. “The
law clearly explains that these are health establishments which
have beds intended for people needing care. They are not private
residences with their own rules,” he said. Nicholas Crognaletti,
who represented a group of homes which campaigned against the
Exit initiative, said: “The community versus private dimension
of these establishments is a real dilemma. Significant collateral
damage created by assisted suicide within such residences is a
real problem”.According to Exit, the situation is different
in the German-speaking cantons. There, it told SwissInfo, 50%
of nursing homes allow assisted suicide under their roofs, up
from 20% only five years ago. ~ Swissinfo.ch, Jun 17


A leading UK ethics group has backed the creation of “three-parent” IVF
babies to battle rare genetic diseases. The London-based Nuffield
Council on Bioethics could see almost no substantial problems
with two procedures that involve transferring DNA from an egg
cell with defective mitochondria to another woman’s egg
that has been stripped of its nucleus. The Nuffield Council is
independent, but is very influential in the UK and its backing
almost certainly means that the controversial procedure will be
recommended by the government’s fertility watchdog, the Human
Fertilisation and Embryology Authority. A working group concluded
that “If proved safe and effective, and if appropriate information
and support is offered, it would be ethical for families to use
these techniques as treatment”. One of the main ethical consideration
is that this is a form of germline therapy, meaning that the slightly
altered genetic code in an embryo will be passed to the next generation.
The chairman of the Council’s working group, science journalist
Geoff Watts, told a press briefing that this is basically a “dry-run” for
subsequent approval of gene-editing technologies. “It’s
obvious that sooner or later someone is going to want to do this
in nuclear genes,” he said.Although the media consistently
described embryos created through “mitochondrial donation” as
three-parent babies, Dr Watts declared that “In our view
there is no justification for ascribing parenthood to this third
individual, or indeed grounds for fears that offspring born through
this technology might find their inheritance confusing or disturbing.” In
any case, some experts had told the Council that human kinship
was a highly fluid concept. “Such relationships range from
those entirely determined by genetic inheritance to others reflecting
social factors alone. Many are based on a sometimes bewildering
blend of the two.”


Science fiction writer Elizabeth Moon has rekindled the debate over whether it’s
a good idea to “barcode” infants at birth. In a BBC radio interview
she says: “I would insist on every individual having a unique ID permanently
attached — a barcode if you will — an implanted chip to provide an
easy, fast inexpensive way to identify individuals.” She argued the tools
used most commonly used for surveillance and identification — such as DNA testing
and video cameras — are costly, slow and often ineffective.Opponents say giving
up anonymity would give rise to an “Orwellian” society where all citizens
can be tracked. “To have a record of everywhere you go and everything you
do would be a frightening thing,” Jay Stanley, senior policy analyst at
the American Civil Liberties Union, told the Daily News.
He warned of a “check-point society” where everyone is implanted with an internal
passport and has to show their papers at every turn, he said. “Once we let the government
and businesses go down the road of nosing around in our lives… we’re
going to quickly lose all our privacy,” said Stanley.In 2002, an implantable
ID chip called VeriChip was approved by the US Food and Drug Administration.
The chip could be implanted in a person’s arm, and when scanned, could pull up
a 16 digit ID number with information about the user. It was discontinued in
2010 due to safety and privacy concerns. Engineers and scientists have not given
up on the idea. ~ New York Daily News, Jun 1


The contentious issue of birth defects in babies conceived with
IVF is on the boil again after a major study was published this
week in the New England Journal of Medicine. Researchers at
the University of Adelaide, in Australia, confirmed earlier
surveys that found an elevated risk of defect among IVF babies.
The odds for any birth defect in pregnancies involving assisted
conception are 8.3%, compared to 5.8% for unassisted pregnancies.However,
they said that the risk seems due to “patient factors” like
obesity or smoking, not to the procedure itself. “In vitro
fertilization off the hook for causing birth defects” was
the headline in Nature’s news blog.However, this was only half
the story. Some fertility treatments appear to be riskier.ICSI
(intracytoplasmic sperm injection), a technique which involves
injecting a sperm into the egg, is one of these. The increased
risk of birth defects is 57% over normal IVF, although the absolute
size of the risk is relatively small.
However, ICSI is very popular. In Europe, for some reason, it is used far more often
than regular IVF.Another area of concern is the tripling of
risk in women using the fertility drug clomiphene citrate to
stimulate ovulation outside of a closely supervised clinical
setting. “While confined to a small group in our study,
this is of particular concern as clomiphene citrate is now very
widely available at low cost, and may easily be used contrary
to manufacturers’ very specific instructions to avoid use if
pregnant, as it may cause foetal malformations.” says the
lead author of the study, Associate Professor Michael Davies.Surprisingly,
cryopreservation (freezing) of embryos is associated with a
substantially reduced risk of birth defects, particularly for
ICSI. “This may be due to developmentally compromised embryos
failing to survive the freeze/thaw process,” says Dr Davies.


People with intellectual disabilities, all children and people
with dementia should be able to request euthanasia, the Belgian
Liberal Humanist Association (HVV) has declared. Its president,
Jacinta De Roeck, a former senator who helped to draft the current
law, says: “We can not accept that a certain group of people
should be completely excluded from self-determination over life
and death.”This is an especially touchy topic in Belgium
because of the euthanasia of mentally handicapped people in neighbouring
Germany under the Nazis. However, Ms De Roeck insists that the
issue has to be considered. “Even someone with mental retardation,
who is found to be mature enough by the team should be able to
ask for euthanasia.”
The HVV is also lobbying for children of any age to have the right to ask for euthanasia.
The HVV website states that “children who are in a hopeless situation have a high
degree of maturity, especially compared to other healthy children.
Setting an age is therefore completely arbitrary.”She has predicted that eventually
minors and people with dementia will have the right in Belgium, although not in the
term of the present government. ~ Humanieuws, Apr 23; Nieuwsblad.be, Apr 21