Maria Caulfield – pro-life MP
When Teresa May reshuffled her cabinet in January she
appointed Maria Caulfield, MP for Lewes, as the vice-chair
for women at the Conservative Campaign Headquarters (CCHQ).
Miss Caulfield was a former senior nurse at the Royal
Marsden Hospital in London and is a current member of the
House of Common’s All-Party Pro-life Group (APPLG). In
March 2017, she led the charge against Labour MP Diana
Johnson’s Ten-Minute Rule Bill, which sought to
decriminalise abortion in the UK. She stated that such
a move would result in abortion on demand, leave young women
less safe and ‘embolden’ men to force women into
abortion. It would, she said, become a ‘charter for
extreme abortion practices’, including sex-selective
abortion.
It did not take long before the feminist flak flew.
For example, Sophie Walker, Women's Equality Party leader,
said Ms Caulfield could ‘never advocate effectively’ for
women. The British Pregnancy Advisory Service (bpas)
accused her of holding views on abortion that were ‘out of
step with members of the public and her own parliamentary
party.’ Caulfield trenchantly replied to such
criticism, ‘It’s a sad day in this country if you can’t have
a different view to someone. To say that someone who
has a different view cannot represent women is absolutely
ridiculous.’ And she Tweeted her answer to the bpas
accusation as, ‘I, and many colleagues who share my views,
will not be silenced as we seek to be a voice of the
voiceless, and as we argue for more modern and humane
abortion law that upholds not only the dignity and rights of
women but the dignity and rights of the unborn child.’
Maria Caulfield has thus been branded a heretic. In
other words, she has become yet another victim of ‘illiberal
liberalism’ and ‘intolerant tolerance’. You cross
swords with these so-called progressives and they will seek
to deny you a voice. We say, ‘Bravo. Good on
you, Maria!’
Good news for conscientious
objectors
Last December, the Faculty of Sexual and Reproductive Health
(FSRH) reversed its earlier decision and will now allow
Christian doctors and nurses (and others who object on
grounds of conscience) to train and work as sexual health
professionals without having to provide abortifacient
devices and drugs, such as the morning-after pill.
In April 2107, the FSRH had insisted that anyone who wanted
to obtain a diploma to work in the sexual and reproductive
health field must ‘prescribe all forms of
contraception’. The FSRH performed this welcome U-turn
after the Christian Medical Fellowship (CMF) threatened
legal action. In June, a similar climb-down on grounds
of conscience had been performed by the General
Pharmaceutical Council (GPhC) in its revised guidelines on
Religion, Personal Values and Beliefs for pharmacy
workers. On that occasion it was the Christian
Institute that had warned the GPhC of an impending court
case.
Conscientious Objection (Medical
Activities) Bill [HL] 2017-19
Way back on 28 June, Baroness O’Loan introduced the first
reading of her Bill in the House of Lords. It is a
landmark attempt ‘to clarify the extent to which a medical
practitioner with a conscientious objection may refrain from
participating in certain medical activities; and for
connected purposes.’ More specifically, it covers
three particular areas of medical practice (abortion, the
withdrawal of life-sustaining treatment and treatment given
under the Human Fertilisation and Embryology Act). It
also seeks to enshrine in law a provision to protect medical
practitioners from being discriminated against if, as a
matter of conscience, they have objected to conducting a
particular medical procedure.’ The Free Conscience
Campaign has been established to support the Bill – see here.
On Friday 26 January, at its second reading, peers spent
almost three hours debating general aspects of the
Bill. It now moves to the Committee stage - a line by
line examination of the Bill - at a date to be
announced. But it has several more parliamentary
obstacles to negotiate, including securing time for
consideration and passage through the House of Commons, as
it bids to become law.
Isle of Man Abortion Reform Bill
On Tuesday 23 January, Dr Alex Allinson, member of the House
of Keys (MHK) for Ramsey, introduced his radical Abortion
Law Reform Bill. Under the current Isle of Man's 1995
Termination of Pregnancy Act, abortions are only permitted
in a limited number of instances, such as a pregnancy
resulting from rape, or because of a woman's mental health
needs. It is estimated that fewer than 10 terminations
occur each year on the Island, with another estimated 100
women a year seeking private abortions in the UK.
The new Bill would allow abortions up to 14 weeks without
the need to see a doctor or to provide any reason for the
abortion. Between 14 and 24 weeks abortion would be
permitted for a ‘serious social ground’, which has yet to be
defined. The Bill would also allow abortion on the
ground of disability up to birth. If the Bill were
passed it would give the Isle of Man the most liberal
abortion law anywhere in the British Isles. The Bill
will be debated at its second reading on Tuesday 30 January,
after which there could be a vote.
Marie Stopes out of NI
The 1967 Abortion Act does not extend to Northern
Ireland. That has generated a personal and a political
battleground ever since.
In October 2012, amid huge controversy, Marie Stopes opened
the first Northern Ireland private abortion clinic in the
centre of Belfast. The clinic has been constantly
picketed, primarily by members of Precious Life. Marie
Stopes promised to provide terminations within Northern
Ireland's current legal framework, namely if continuing a
pregnancy would put a woman's life at risk, or pose serious
long-term damage to her physical or mental health.
In the six years prior to 2012, only 262 legal abortions had
taken place in Northern Ireland. Meanwhile, just over
1,000 women each year were travelling to England and Wales
for terminations. The Northern Irish pro-choice
argument has always been that having to travel to the rest
of the UK or further abroad to access safe, legal abortion,
exacts an unfair financial and emotional cost on the
Province’s girls and women.
Then the Province’s pro-life status began to be craftily
dismantled. In June, the Westminster government
announced that Northern Ireland residents would be given
access to free abortion services on the NHS in
England. And in October, the government said that
women on low incomes – those on less than £15,300 a year –
would also be entitled to help with their travel costs.
Finally, in December 2017, the Marie Stopes’ Belfast clinic
closed. The reason given was that local women could
now have NHS-funded terminations in the rest of the
UK. Pro-life groups were delighted at the
closure. The director of Precious Life, Bernadette
Smyth, described it as a ‘massive pro-life victory’.
They maintained that the Marie Stopes clinic was little more
than a publicity stunt, and because of the Northern Irish
strict abortion laws the clinic had actually performed very
few abortions.
Bpas – bad losers
Last December, Both Lives Matter, a pro-life group
based in Belfast, won the Northern Ireland Public Affairs
Campaign of the Year award. It was for its '100,000'
billboard campaign, which referred to the 100,000 lives that
have been saved because the 1967 Abortion Act has not been
extended to Northern Ireland.
Despite bpas also being nominated for its campaign to reduce
the price of the morning-after pill, it and other abortion
providers were unhappy that a pro-life group had been
invited to the awards ceremony, let alone won it.
Representatives from bpas, the FPA and the Abortion Support
Network wrote to the hosting organisation, the Public
Relations and Communications Association (PRCA), stating
that it was ‘providing an endorsement for the denial of
healthcare and human rights.’ And that ‘bpas was
delighted to have been shortlisted for our campaign to
reduce the inflated price of emergency contraception, but
under the circumstances no longer wants recognition from an
organisation which is also happy to celebrate the systematic
suppression of the rights of women and girls to basic
healthcare. Please accept this letter as notice of the
withdrawal of our entry.’
Francis Ingham, the director general of the PRCA, stood his
ground and replied inter alia, ‘Whilst I appreciate
that you disagree fundamentally with the work of Both
Lives Matter, I would hope that you might consider
that the Public Affairs Awards is recognising Both Lives
Matter in the same spirit of democratic freedom within
which that organisation may campaign as freely as
organisations like bpas, FPA, Abortion Support Network
…’ He concluded his reply with, ‘I note with regret
the withdrawal of your entry.’
SofTouch – the new old
Among the New Year natter was the launch of a new abortion
device called SofTouch. It is reported to be nearly
100% effective and able to complete an abortion in 60 to 90
seconds if the patient is less than six weeks pregnant and
in about two or three minutes if she is between six and ten
weeks.
The device was apparently developed in 2011 by Dr Joan
Fleischman, a Harvard-trained physician, who was inspired
‘to normalize the early abortion experience’ – ugh! In
essence, it is based on the old 'manual vacuum aspiration'
(MVA) method. Its only new feature is that it fits
into the palm of a doctor's hand. The SofTouch®
website states that it is ‘noninvasive and natural’.
Neither of those statements is true. Abortion is
always invasive because to reach and extract the embryo or
foetus the woman must be invaded internally and
intrusively. And all abortions are unnatural, they are
the deliberate interruption of a natural pregnancy.
Furthermore, SofTouch is advertised as the least invasive
form of abortion that does not require sedation, an
operating room, fasting the night before, or an electric
suction machine. Big deal. The heart, the be-all
and end-all, of abortion is not the method, but the object
of the method, namely the snuffing out of the life of an
innocent unborn child. SofTouch alters nothing.
Assisted Reproductive Technologies
IVF
in the UK - 2016-17
In December 2017, the Human Fertilisation and Embryology
Authority issued its first-ever State of the fertility
sector: 2016-17 report. It assessed the
performance of fertility clinics and research laboratories
in the financial year 2016-17 by reporting on inspection
findings, incidents and patient feedback. The full
report may be accessed
here.
In 2016-17, approximately 60,000 patients underwent a total
86,016 treatment cycles in 119 licensed fertility clinics
across the UK. These consisted of 76,469 IVF, 4,051
partner inseminations and 5,496 donor inseminations.
The publication’s style is upbeat. It opens with, ‘Our
vision for fertility services in the UK is high quality care
for everyone affected by fertility treatment. We want
patients and donors to have access to safe, ethical and
effective treatment with good outcomes.’ And it
focuses on its apparent star indicator, ‘The report shows
that fertility clinics perform very well on minimising
multiple births: 86% of clinics have met our stretching
target of no more than 10% multiple births. Working
together, we have reduced the national multiple birth rate
from 24% in 2009 to 11% today without reducing birth
rates. This is a fantastic achievement which has
increased the safety of IVF for mothers and their babies and
reduced the burden on NHS ante- and neonatal services.’
However, all is not so jolly and bright. True, the
number of IVF treatments showed a 6% increase over those
from 2015. But during 2016, clinics reported 502
adverse incidents and 38 near misses – ‘a slight increase
from those reported in 2015.’ Such incidents, though
relatively rare at about 1% of all treatments, have
increased by 8.5% from the previous year – hardly ‘a slight
increase’.
Adverse incidents are graded from A to C. There was
only one grade A, which involved the birth of a baby with
cystic fibrosis (CF) which occurred because of inadequate
paperwork – the parents were not aware they were CF carriers
and would have destroyed the embryo if they had known.
Comparing 2016 and 2015 data, there was a lower number of
grade B incidents (serious harm to one person, such as the
loss or damage of embryos, 176 vs. 200) and a higher number
of the less serious grade C incidents (involves minor harm,
such as one of many eggs being rendered unusable, 325 vs.
267). Near misses are defined as ‘in which only luck
[yes, that very word is used] prevented an incident from
occurring’ (38 vs. 30).
These are a cause for grave concern, or they should
be. However, a sense of jauntiness exists in the
industry. For example, Adam Balen, Chairman of the
British Fertility Society, stated, ‘We welcome the report,
which shows the extraordinary commitment our specialty has
to transparency ... We are confident that, in reality, there
is no evidence that practices have changed or that there
ought to be concerns about the sector.’ Well,
Professor Balen, I can think of at least 10 concerns about
the sector.
Surrogacy in India and Russia
Surrogacy has it supporters and its detractors. But
what can governments do? An outright ban drives the
practice underground or abroad. A complete
free-for-all diminishes motherhood, pregnancy and family,
and abandons the vulnerable. The UK has taken a middle
road – commercial surrogacy is prohibited.
In India, the government is rethinking its
regulations. In 2012, gay couples were banned from
using commercial surrogacy. A loophole appeared –
frozen sperm could arrive in Delhi where it fertilised ova
from Indian donors and any resulting embryos could be
transferred into Indian surrogates who were then moved
across the border into Nepal for nine months. So, in
March 2017, the Indian government extended the commercial
ban to everyone. Now, only so-called ‘altruistic
surrogacy’ – when a consenting female family member bears a
child for a childless heterosexual Indian couple without pay
– is allowed.
Meanwhile, surrogacy is booming in Russia. The laws
are vague and lax. It is estimated that 2,000 children
were born in Russia to surrogate mothers in 2016.
Nationwide there are around 100 surrogacy centres, including
40 in Moscow. The financial incentive of commercial
surrogacy is substantial. Whereas Russian teachers, a
common profession for women, earn about US$700 to 850 a
month, the fee for a surrogate mother is about $14,000 –
equivalent to roughly 18 months’ wages.
Another bizarre IVF story
We like to keep a record of the curiosities and oddities
associated with ARTs. And there are many. Of
course, we already know about grandmothers giving birth to
their grandchildren. And babies with two fathers and
three mothers, and post-menopausal women having babies.
Here is another. Emma Wren Gibson, conceived within a
year of her mother, was born on 25 November 2017. She
is known as a ‘snowbaby’, an embryo frozen and stored for
later possible later use. In this case she was frozen
on 14 October 1992, or 24 years before she was born, the
longest known time between freezing and birth. Emma
and her mother Tina were conceived just a year or so
apart. Weird?
On 13 March, Carol Sommerfelt, IVF laboratory director at
the National Embryo Donation Center at Knoxville, Tennessee,
thawed the embryonic Emma and transferred her into Tina
Gibson. Emma was born a healthy baby, weighing 6
pounds 8 ounces and measuring 20 inches long.
Here is the backstory. Seven years ago, in 2010,
Benjamin and Tina Gibson were married. He had cystic
fibrosis so infertility was not unexpected. They
fostered several children and thought of adopting.
Then they heard about embryo adoption. They had two
weeks to go through the profiles of 300 possible embryo
donors. Looking at the characteristics of the
anonymous donors they picked two – their first choice
failed, so three embryos from their second choice were
used. Tina became pregnant with Emma.
What can possibly be wrong here? After all the
National Embryo Donation Center is a faith-based
organisation, founded in 2003. Its website states,
‘Christian faith is the overriding principle upon which we
operate.’ And Tina has said, ‘We're just so thankful
and blessed. She's a precious Christmas gift from the
Lord. We're just so grateful.’ For more
substantial answers, read the section on IVF in chapter 3 of
my Bioethical Issues book. There is even a piece there
about embryo adoption on p. 94.
The cost of IVF
There are numerous costs to IVF – temporal, medical,
psychological, relational, ineffectual, social, bioethical,
and so on. And of course, there is financial, the
easiest of the costs to quantify.
The NHS is increasingly restricting free access to
IVF. Guidance from the National Institute for Health
and Care Excellence (NICE) recommends three cycles of IVF on
the NHS for women aged under 40 and one cycle for some women
aged 40 - 42. However, three cycles are currently
offered by only 24 out of 208 clinical commissioning groups
(CCGs) in England. Seven CCGs offer no funding at all
for IVF – the rest offer either one or two cycles.
The upshot is that more patients, currently 60%, are facing
the cost of private treatment. Opinium, the market
research company, recently reported that the average market
price for a single treatment cycle of IVF is £3,348.
The highest UK price was £4,195 and the lowest £2,650.
But that is not all. Patients face additional charges
for registration fees, sedation, blood tests and
drugs. Such costs vary between clinics from £655 to
£2,335. The total cost is therefore likely to be at
least £4,000 per cycle. And that is for a treatment
that is only about 25% successful.
The shrinking family
The Office for National Statistics (ONS) has recently
reported that the average size of families in England and
Wales has fallen to a record low – the fertility rate has
dropped to 1.9 children per woman. And almost one in
five do not have any children.
This low figure is partly linked to voluntary childlessness,
women delaying motherhood for career prospects, financial
reasons and later marriages. The ONS compared two
cohorts – a young group of 45 year olds and an old group of
72 year olds, somewhat equivalent to the mothers of the
young group. On average, the young had 1.9 children
per family whereas the old had 2.2. Families with four
or more children have also decreased, 10% vs 20%.
Unsurprisingly, childlessness is also increasing with 18%
(and 44% by the age of 30) vs. 11% among the older group.
The demographic pattern of families and childbearing are
showing disappointing trends. Having children is now
regarded as less and less aspirational. And delayed
parenthood is causing unsolvable problems for more and more
couples. Such a situation may be good news for IVF
practitioners, but for the socially-aware and the
bioethically-sensitive the future looks grim.
IVF milestones in the UK
In early January 2018, in support of National Fertility
Week, the HFEA published some interesting figures. For
example, the total number of treatment cycles carried out in
UK clinics since records began passed the million barrier in
2015 (the year for the latest data). The overall
number of treatments carried out since 1991 was 1,034,601.
Since 1991, some 300,000 children in total have been born in
the UK as a result of IVF and donor insemination treatments
from licensed fertility treatments. Fertility
treatments have grown markedly since 2010, with almost a
third of all IVF and DI babies since 1991 arriving in the
last six recorded years, that is, from 2010 to 2015.
The number of treatments for women aged 18 to 34 remain the
largest single group (28,101), accounting for 43% of all
cycles, while women aged 40 and over account for just 20%
(13,333), with very few treatments being provided to women
over 45.
Sally Cheshire, chairwoman of the HFEA welcomed these new
data as a sign of a thriving and successful fertility
sector. She said, ‘The figures we have released today
show that the UK’s fertility sector continues to be one of
the most vibrant and successful in the world.’ Not
everyone would agree with Sally’s cheery sentiments.
Genetic
Engineering
On
cloning primates
The big biological news during January 2018 came from China,
where scientists have created the first cloned primates, two
macaques, with a technique similar to the one used to clone
Dolly the sheep way back in 1996. Though successful with
several mammalian species, this somatic cell nuclear transfer
(SCNT) method has failed to produce live primates until now.
This is the work of Zhen Liu et al., which appeared in
Cell (24 January 2018) under the title, Cloning of
Macaque Monkeys by Somatic Cell Nuclear Transfer.
The two identical, crab-eating cynomolgus monkeys (Macaca
fascicularis), named Zhong Zhong and Hua Hua (they look
seriously cute), were delivered by Caesarean section at the
Chinese Academy of Sciences in Shanghai.
The research team started by removing the nuclei from
fibroblasts from an aborted female macaque foetus, rather than
an adult. These were inserted into 129 macaque
denucleated ova, which were then cultured and artificially
stimulated to cause the zygotes to begin cell division.
At this point, novel culture conditions and chemical
modulators, to switch on or off certain genes that were
inhibiting embryo growth, were developed and used. The
outcome was 109 SCNT embryos. A total of 79 of these
were transferred into 21 surrogate monkeys, which resulted in
six pregnancies but only two live birth survivors – they were
born in December 2017.
Why did this team succeed where others had previously
failed? The paper states it was due ‘to the optimisation
of the nuclear transfer protocol, the use of fetal cell
nuclei, and epigenetic modifications. All of them
together greatly improved the quality of blastocyst
development and pregnancy rate.’
Two immediate questions arise – why clone monkeys, and will
humans be cloned? First, Lui and his colleagues hope to
use this revised SCNT technique to develop populations of
genetically-identical non-human primates to provide improved
animal models of human disorders, such as cancer, and for
testing potential drug treatments. This technology
could, some say, also be combined with CRISPR–Cas9 to create
genetically-engineered primate-brain models of human
disorders, including Parkinson’s disease.
Second, this achievement inevitably raises concerns among
scientists and the public that the technique might be used to
create cloned humans. Mu-Ming Poo, a co-author of the
paper, has said, ‘Technically, there is no barrier to human
cloning. We want to produce genetically-identical
monkeys. That is our only purpose.’ Nevertheless,
it is common knowledge that there are at least a handful of
cloning mavericks around the world, who have already tried,
and so far failed, to clone humans. For them, this
improved SCNT will be like sweets to a child.
This improved SCNT method works, but not very well. Even
so, the Shanghai lab is expecting the birth of another six
macaque clones soon. Some regard all this as the
beginning of a new era for biomedical research. And
human cloning is again being discussed, if not pursued.
So where are the restraints? There are no international
agreements preventing human cloning. It is not illegal
in most of the USA, whereas it is currently prohibited in, for
example, Germany and the UK. The prudent strategy –
human SCNT should be banned worldwide, and soon.
Gene editing – risks and dangers
How should we assess gene editing? Nathan Gardels has
considered some of the issues (Washington Post, 15
December 2017). The application of this relatively new
technology of gene editing to the human condition is full of
both promise and peril. The process certainly has the
potential, and the emerging actuality, to eliminate some
genetically-induced diseases, boost the immune system and
extend longevity. Then again, it can easily cross
ethical boundaries. For example, it can change the
human genome forever by altering the germline and passing
those changes down through the generations. In short,
gene editing can be good and bad.
Bioethically, the dangers are only too apparent. Craig
Venter, the man who led the team that first mapped the human
genome and who remains at the forefront of synthetic
biology, understands this. For him, it is a red
line. He is fearful of the temptation to construct
permanent germline fixes. He warns that this red line
should not be crossed because it can only be tested through
experiments on humans. He has stated, ‘The world
agreed at the end of World War II to stop all direct human
experimentation. Human germline editing would cross
that boundary and take us back into random human genome
editing, just to see what happens. We should not let
this happen.’
Others worry that the science is outstripping the
ethics. But how are ethical boundaries to be built and
maintained? Already, in China during 2015, gene
editing has modified the human embryo – that was once
thought to be the red line. Moreover, it has now been
reported that as many as 86 patients in China have had their
genes altered in clinical trials to treat a range of
diseases. Bioethical thinking and scientific practice
must somehow come together and dialogue. But that will
prove to be more than difficult in a world where some are
driven, despite the unknown risks and unintended
consequences, to be the discoverers of the next scientific
breakthrough and leaders of the next medical
revolution. Vainglory is not a trait found only in
non-scientists.
The vast majority are convinced that gene editing needs
regulating, but so far few have been able to suggest
guidelines, not to mention rules and laws. Yet
effective regulation would minimize risks and reassure the
public. The accomplishment and reality of germline
modification of human embryos and the subsequent threat of
the ‘designer baby’ have rocked the scientific and public
communities. And this year comes evidence that the
Cas9 component of the CRISPR-Cas9 system can have
pre-existing cell-mediated adaptive immune responses in
humans, which could potentially produce adverse effects in
patients.
Is science out of control? Will the mavericks
prevail? Have they already conquered? The future
of safe, ethical human medicine can at times look pretty
slippery.
Yet gene editing is not inherently evil, or wrong, or even
amiss. It can be both benign and beneficial. For
instance, look at the next article.
Goodbye inherited deafness?
When Ludwig van Beethoven realised, at the age of 32, that
his hearing was failing, he wrote, ‘as the leaves of autumn
wither and fall, so has my own life become barren’.
Hearing loss later in life is common and some is linked to
inherited DNA changes. Could gene editing provide a
cure?
Xue Gao and his colleagues at Harvard University think
so. They have reported successfully using CRISP-Cas9
technology to treat a mouse model of inherited human
deafness. Their work was published as Treatment of
autosomal dominant hearing loss by in vivo delivery of
genome editing agents (Nature, 2017, 553:
217–221).
Hearing is a remarkable process. In the inner ear are
tiny cilia, hair-like structures, which respond to sound
waves. Ciliary movement produces an electrical signal
via a protein assembly at the base of each hair which
changes when motion occurs. A protein, known as Tmc1
(transmembrane channel-like gene family 1) is part of that
assembly. Mutations of Tmc1 cause some people
to lose their hearing.
Gao’s team used mice from the so-called Beethoven strain –
these animals have a Tmc1 mutation that matches the human
faulty gene and causes them to grow deaf over time.
The repair of this type of deafness is a delicate
matter. Two copies of the gene exist – the mutated
gene must be disabled while preserving the good gene within
the same cell. In fact only one nucleotide of DNA
distinguishes the two versions of the Tmc1 genes –
adenine nucleotide (A) occurs in the mutant at a position
that should be thymidine nucleotide (T).
The authors used CRISPR–Cas9 gene editing to solve the
problem and cut out the mutant form of the gene.
Moreover they solved the tricky problem of delivery by
encapsulating the CRISPR components in Cas9–guide RNA–lipid
complexes to deliver it directly into the inner ears of the
mice, rather than the more common use of a virus. And
it worked. Eight weeks after the injection, untreated
mice did not flinch at 120-decibel noise – roughly the
volume of a rock concert or a chainsaw – whereas the treated
were significantly startled by such noise. As the
authors elegantly put it, ‘Enhanced acoustic startle
responses were observed among injected compared to
non-injected Tmc1 mice.’
This research has provided a first step towards human
clinical trials. In mice, it is safe and
effective. Of course, much more needs doing, but
gene-editing techniques have an astonishing habit of
transferring apace to human patients.
Josiah Zayner, CRISPR showman
If you were present at SynBioBeta 2017, a biotech conference
held at San Francisco last October, you might have seen the
36-year-old Dr Josiah Zayner inject his left forearm with
supposedly CRISPR components in a bid to grow bigger
muscles. The audience was flummoxed, Zayner was in
earnest. The former NASA biochemist knew that
myostatin is a protein that regulates muscle cell growth, so
if CRISPR can destroy it, his muscle mass should
increase. The injection procedure was streamed live on
the internet, of course.
However, that was not Zayner’s primary objective of his zany
display. As the founder and CEO of The ODIN – a
biotech company that provides CRISPR home lab kits for the
general public – he did it, ‘In order to show people how
accessible this technology is, I needed to make a statement
by attempting to engineer myself.’ Zayner believes the
future is going to be dominated by genetic engineering and
‘consumer genetic design will be a big part of that.’
Moreover, he maintains that this ‘technology [CRISPR] can’t
just be in the hands of wealthy corporations, it is too
powerful and needs to be made available to everyone.’
He has his critics, not least the US government. The
US Food and Drug Administration (FDA) considers any use of
CRISPR editing in humans to be gene therapy and the sale of
DIY kits to produce gene therapies for self-administration
is illegal. To those opposers who consider his methods
are unscientific and harmful, Zayner says, ‘I have written
out the exact protocol and made available all information
and DNA sequences used at Josiahzayner.com, including
scientific papers that I based my work on.’
Is Dr Josiah Zayner a crackpot? Yes and no. He
is known as a biohacker as well as a conventional
scientist. He is certainly a showman scientist with a
technical cause and a financial case. He says, ‘I want
to help humans genetically modify themselves.’ His
menace is that he has few, if any, bioethical
moorings. For example, he has no problem with the
creation of ‘designer babies’. He argues, ‘Sex is the
worst form of genetic engineering and we allow it to wreak
havoc on the lives of people. It causes unpredictable
genetic changes in the embryo that can lead to harmful
traits. I support and champion the ability to
alleviate suffering, and if that means so-called ‘designer
babies’, then I support it. I don’t think you can stop
it and so instead we should figure out ways to make it
accessible and safe.’
Incidentally, there is no current report that his planned
stunt in San Francisco worked.
Stem-cell
Technologies
Early
embryo development
We know so little about the details of early human embryo
development. One reason, of course, is that the
processes are difficult to access experimentally. The
bioethical dilemmas associated with this sort of work are
noted. A recent paper by Shahbazi et al. (Nature,
2017, 552: 239–243) has revealed a little more
information about this most remarkable biological
progression.
About 6 days after fertilisation, the embryo forms a
structure called the blastocyst, which contains a mass of
pluripotent embryonic stem cells, which can give rise to any
of the 200 or so different cell types in the impending adult
body. It is the blastocyst that implants into the
uterus over a period of between the next 5 to 12 days.
Implantation can be put on hold by maternal hormones, which
induce the blastocyst to secrete the protein called
leukaemia inhibitory factor (LIF) and to enter a dormant or
‘native’ state.
When LIF is removed, these embryonic stem cells become
‘primed’ and can initiate their differentiation into the
various cell types that build the body. The role of
these different states is not clear – it may be that LIF
removal primes the embryo to resume development, therefore
acting as a sort of checkpoint prior to implantation.
At implantation, the embryo undergoes a dramatic change in
shape. The amniotic cavity, which will contain the
growing embryo and the fluids that surround it, begins to
form within a circle of primed pluripotent cells.
Shahbazi et al. used human and mouse embryos to
study the coordination between the loss of pluripotency and
the formation of the amniotic cavity. They found that
first, the cells arrange into circular rosette structures,
with their apical ends in close proximity. Second,
fluid-containing vesicles are trafficked towards the apical
interfaces between cells, and tight junctions are
formed. Then negatively-charged, membrane-spanning
apical proteins called sialomucins are produced to form a
negatively-charged gap in the centre of the rosette.
Sialomucin production is induced after LIF removal.
The researchers next showed a potential role for the protein
Oct4 in regulating sialomucin expression. Indeed, Oct4
seems to have a crucial role in controlling early human
development. Furthermore, other proteins, such as the
tight-junction protein cingulin, which is produced when LIF
is removed, may also have a role in cavity formation.
This work has outlined a possible mechanism by which embryos
coordinate the changes from the loss of pluripotency to the
formation of the amniotic cavity. It is fascinating
stuff. You too have passed through those
changes. Let no one say that we are not ‘fearfully and
wonderfully made’.
Strimvelis and SCID
ADA-SCID (severe combined immunodeficiency) is a rare
disorder caused by the lack of an enzyme, adenosine
deaminase, which is required for the production of
lymphocytes. Children born with ADA-SCID have impaired
immune systems, which sometimes force them to live in
sterile plastic bubbles to protect them from possibly fatal
bacterial or viral infections – they are sometimes known as
‘bubble babies’.
The first clinical trial of somatic gene therapy was aimed
at this disease during 1990 in the USA. It worked,
sort of – the little girl required repeat doses of
genetically-engineered T-lymphocytes. Other similar
experimental trials have since taken place, but their
outcomes have been mixed, even fatal.
Now comes the first example of a commercially-available
product, recently approved by NICE, and accessible from
February on the NHS. It is called Strimvelis and has
been developed by GlaxoSmithKline. It uses a virus to
insert a healthy copy of the faulty gene into the patient’s
extracted stem cells. These engineered cells are then
returned to the patients’ bone marrow.
Gene therapy was once excitedly hailed as a panacea for many
disorders. Failures and technical problems have slowed
that excitement. But Strimvelis could restore that
enthusiasm. It has already been successfully used to
cure ADA-SCID in a four-year-old Belgian girl, Margaux
Moreels. The first UK patient may be the one-year-old
Henry Vinen.
The cost of a Strimvelis one-time treatment is about
£525,000. There are concern that such drugs produced
for rare genetic diseases are not always commercially viable
and this may inhibit further investment in stem-cell gene
therapy. Then again, Susan Walsh, director of Primary
Immunodeficiency Disorders UK, regards Strimvelis treatment
and NICE’s approval as a breakthrough because, ‘This opens
the way for treating many other rare genetic conditions that
blight the lives of thousands of people.’
Euthanasia and Assisted Suicide
Conway
continued
The latest development in the case of Noel Conway, the
68-year-old man suffering with motor neurone disease,
occurred on 18 January 2018. Two judges from the Court
of Appeal granted him permission for a full hearing against
an earlier decision, which rejected his challenge to the
current law on assisted suicide. This latest judgment
was handed down following an oral hearing at the Royal
Courts of Justice. The case of Noel Conway vs.
Secretary of State for Justice, which is supported by the
Dignity in Dying organisation, was dismissed by the High
Court on 5 October 2017 following a four-day hearing in
July. It will now proceed to the Court of Appeal later
this year – the Court heard from his legal team that Mr
Conway has ‘more than six months to live, but not much more’
and that an early hearing of the appeal would be welcome.
Mr Conway’s lawyers have previously argued that the current
blanket ban on assisted suicide under the 1961 Suicide Act
is incompatible with his rights under section 8 of the Human
Rights Act, which ensures respect for private and family
life. Last October, three senior judges, Lord Justice
Sales, Mrs Justice Whipple and Mr Justice Garnham rejected
his case. They concluded, 'It is legitimate in this
area for the legislature to seek to lay down clear and
defensible standards in order to provide guidance for
society, to avoid distressing and difficult disputes at the
end of life and to avoid creating a slippery slope leading
to incremental expansion over time of the categories of
people to whom similar assistance for suicide might have to
[be] provided ... we find that section 2 (right to life) is
compatible with the Article 8 rights (private and family
life) of Mr Conway. We dismiss his application for a
declaration of incompatibility.’ Thus the Divisional
Court refused him permission to appeal, so Mr Conway then
filed an application in the Court of Appeal seeking
permission directly. This is what has now been
granted.
It should be remembered that since 2003 there have been
almost a dozen attempts to legalise assisted suicide through
the Assemblies and Parliaments of the UK. All have
failed. Most significantly, the last of these was the
2015 Marris Bill in the House of Commons. It was
roundly defeated by 330 votes vs. 118. This failure of
its cause through the various legislatures has led Dignity
in Dying to switch its strategy to the courts.
It is to be hoped that the Court of Appeal will agree with
the High Court’s decision of last October and dismiss this
case again.
Withdrawal of clinical
assistance
On 13 November yet another ground-breaking right-to-life
case, NHS Trust vs. Y and Another was decided in the Court
of Protection. This time it was pronounced by Mrs
Justice O’Farrell.
The case concerns a 52-year-old man, known as Y, who, in
June 2017, suffered cardiac arrest after a heart
attack. It had not been possible to resuscitate him
promptly and so he suffered severe cerebral hypoxia causing
extensive brain damage. Y lacked capacity to make
decisions about his future treatment and care. Two
neurological rehabilitation experts agreed that Y had no
awareness of self or his environment and that it was highly
improbable that he would re-emerge into consciousness.
The NHS Trust’s clinical team and Y’s family were agreed
that it would be in his best interests for so-called
clinically-assisted nutrition and hydration (CANH – commonly
called food and water) to be withdrawn, with the consequence
that he would die within a period of two to three weeks.
The NHS Trust had sought a declaration that it was not
mandatory to bring before the Court of Protection the
proposed withdrawal. The Official Solicitor, appointed
to act on behalf of Y and represent his best interests,
accepted that there was no statutory obligation to bring an
application for such withdrawal, but submitted that it was
good practice to ensure that Y’s human rights were not
infringed and to provide independent scrutiny of the
decision.
Mrs Justice O’Farrell ruled that it was not mandatory to
bring before the Court of Protection this matter of the
withdrawal of CAHN from Y, who had a prolonged disorder of
consciousness in circumstances, and where the clinical team
and Y’s family were agreed that it was not in his best
interests that he continued to receive that treatment.
This case resonates with that of Tony Bland, when, in 1993,
the Law Lords made a momentous declaration that artificial
nutrition and hydration (namely CAHN) was to be regarded as
medical treatment, rather than basic nursing care, and
therefore could be withdrawn. Tony Bland died nine
days after the withdrawal of food and water and so became
the ninety-sixth victim of the Hillsborough disaster.
This was considered by many to be ‘euthanasia coming in by
the back door’.
Since 1993, all similar cases have sought prior approval
from the court. Mrs Justice O’Farrell’s judgement
changes all this. And it sets a dangerous
precedent. Indeed, the Official Solicitor has appealed
this decision and a Supreme Court hearing is expected to
take place on 29 January.
Victoria legalises euthanasia
Victoria has become the first state in Australia to legalise
voluntary euthanasia. It came after marathon debates
in both Houses, including two all-night sittings. In
October 2017, members of the Lower House voted 47 vs. 37 in
favour of the mandating Voluntary Assisted Dying Bill.
The following month, the Upper House passed the legislation
by 22 vs. 18. Then a week later, on 29 November 2017,
after a number of amendments were approved by the Lower
House, the state parliament enshrined voluntary euthanasia
in law.
This landmark legal change, to take effect in June 2019,
will allow terminally-ill adult patients, who face
intolerable suffering and with an estimated life expectancy
of no more than 6 months, to apply for an assisted
death. Under this new Victorian law, a doctor will be
permitted to administer a lethal injection only in cases
where patients are physically incapable of doing it
themselves.
Australia has tried it before. In 1995, its Northern
Territory introduced the world's first voluntary euthanasia
law, but it was overturned by federal authorities in
Canberra eight months later. This new legislation in
Victoria is significant because it marks the first time in
the world that a parliament has gone through an extensive
process to introduce voluntary euthanasia. Other
jurisdictions have introduced such laws through referendum
or courts.
The news has divided doctors across Australia. The
Australian Medical Association Victoria issued a statement
saying the new law would, ‘cause anguish for some members of
our profession, as well as the public.’ Lorraine
Baker, the group’s president, stated, ‘This is a significant
change in medical practice and patient care and requires the
strongest safeguards and protections.’
Italy move in the wrong direction
On 14 December, the Italian Parliament passed a
controversial end-of-life bill by 180 votes vs. 71 with 6
abstentions. The new legislation does not permit
assisted suicide or euthanasia, but it is undoubtedly a move
in the wrong direction. Apparently this law is the
result of 30 years of campaigning and 3,000
amendments. But it was never enough for euthanasia
enthusiasts. Marco Cappato, a spokesman for the
right-to-die movement, said, ‘Of course, we are still
missing the legalisation of euthanasia – that we'll propose
to the next parliament.’
Pope Francis may have, presumably inadvertently, given
support to the new law, when in November he stated that only
‘ordinary’ care should be provided to the dying, not
‘extraordinary’ care that extends life at all costs.
The Roman Catholic official position is that food and drink
are ‘ordinary’ care. On the other hand, the new law
regards clinically-assisted nutrition and hydration (CAHN)
as medical intervention because it is administered through
health devices and, consequently, can be rejected or
suspended. And Italians will now be able to write
‘living wills’ in which they can refuse not only medical
treatment, but also CAHN. Sadly, the new law does not
provide doctors with the right to refuse participation via a
conscientious objection measure.
Canadian ODE
ODE is the practice of organ-donation euthanasia. It’s
been discussed before, it’s been posited before and it’s
even been practised before – in Belgium and the
Netherlands. Now Canada has seen the supposed value of
such pragmatism.
Medical assistance in dying, or MAiD, became legal is Canada
on 1 July 2016. Since then, some of those opting for
assisted suicide have also donated organs and tissues for
transplant, but the numbers have remained small – for
example, only 5 organ donations and 56 tissue donors in
Ontario so far. That number could rise soon.
Canadian doctors are seriously thinking about the logistics
of ODE. The ethics has presumably already been
settled. Dr Adrian Robertson is medical director of
Transplant Manitoba’s Gift of Life scheme. He has
said, ‘We’re trying to reduce the impact of organ donation
on the last few hours of their life. We want it to be
a time they enjoy with their friends and family and leaves
everyone with lasting memories, not of a hospital.’
For successful ODE to happen, patients must be in a
transplant-capable hospital, close to an operating
room. Robertson admits that, ‘Most patients would
prefer to die at home. So this [ODE] is an extra
burden to the patient. That’s explained to them, and
in some ways signifies their interest in donation that
they’re willing to forgo that part of the beauty of medical
assistance in dying and take on this extra burden of
donation.’ ODE has a clear message – your death has
greater value than your life.
USA and Elsewhere
March
for Life 2018
Friday 19 January just about the 45th anniversary of the Roe
vs. Wade verdict, which legalised abortion throughout the
USA. Every year this is commemorated by a March for
Life at Washington DC and at other locations across America.
This year’s theme was ‘Love Saves Lives’. And this
year, the crowds experienced a first. As the first
sitting President, Donald Trump addressed them directly from
the Rose Garden of the White House. Speaking via a
live video-feed to the gathered pro-life supporters he
declared, ‘The March for Life is a movement born out of love
... and you love every child born and unborn, because you
believe that every life is sacred, that every child is a
precious gift from God.’ ‘As you all know Roe vs. Wade
has resulted in some of the most permissive abortion laws
anywhere in the world. For example, in the United
States, it's one of only seven countries to allow elective
late-term abortions along with China North Korea and
others.’ ‘It is wrong,’ he said. ‘It has to
change.’ ‘Under my Administration, we will always
defend the very first right in the Declaration of
Independence and that is the right to life.’ ‘We are
protecting the sanctity of life and the family as the
foundation of our society. But this movement can only
succeed with the heart and the soul and the prayer of the
people.’
Mr Trump has been called ‘a rampant narcissist and
semi-literate man-child who listens to no one.’ Yet he
has also become known as the ‘most pro-life president in
American history’. Since taking office, he has
reinstated the Mexico City Policy, which prevents US foreign
aid from going to organisations that commit or promote
abortion abroad. He has signed a law allowing states
to defund the great abortion provider, Planned Parenthood,
appointed a number of strong pro-life advocates to key
Administration positions and ended Obama's Health and Human
Services contraception and abortion pill mandate requiring
employers to violate their consciences. And on 18
January 2018, Trump created a new division within the
Department of Health and Human Services (HHS), the
Conscience and Religious Freedom Division of the Office of
Civil Rights, to enforce ‘laws and regulations that protect
conscience and prohibit coercion on issues such as abortion
and assisted suicide’ for healthcare workers. And he
proclaimed Monday 22 January to be ‘National Sanctity of
Human Life Day’ to juxtapose with the 45th anniversary of
Roe vs. Wade.
As ever, the ‘Big 3’ television networks – ABC, CBS and NBC
– largely ignored the March for Life. They devoted
only a combined 2 minutes and 6 seconds of coverage in their
evening news’ programmes. The very next day, perhaps
predictably, these TV networks gave three times more airtime
to coverage of the pro-abortion Women’s March in Washington.
More US pro-life legislation
During mid-December, in Ohio, a pro-life bill protecting
preborn babies with a probable Down’s syndrome diagnosis was
sent to Governor John Kasich’s desk for him to sign it into
state laws. The Down Syndrome Non-Discrimination Act
was passed by the Ohio Senate 20 vs. 12 and by the Ohio
House 63 vs.30 in November. Later this year, Kentucky
could become the first state in the US to have no abortion
clinics. The state's last remaining clinic, the EMW
Women's Surgical Centre in Louisville, is facing closure
after the state’s pro-life Republican governor argued it
does not have the right licensing requirements. Such
pro-life laws have been enacted several times before across
several states. They are always fiercely disputed by
pro-choice campaigners, challenged through the courts and
usually eventually repealed. Yet, if you don’t try …
Before the US Senate has been the Pain-Capable Unborn Child
Protection Act. This would prohibit abortion after 20
weeks of pregnancy based on the substantial scientific
evidence that foetuses can feel pain by that stage of
development. On 3 October, the House of
Representatives passed this bill by 237 votes vs. 189, for
the third time in the last five years. However, the
legislation faced an uphill battle in the Senate, where
Republicans did not have the 60 votes necessary to overcome
a filibuster, a procedural blocking device, from Senate
Democrats, who wreaked a similar bill in 2015. And so
on 29 January, as expected, the Democrats filibustered the
bill in a 51 vs. 46 vote, so it failed. And so an
estimated 6,000 late-term abortions on babies older than 20
weeks will occur this year in the US. And this is
despite a recent Marist opinion poll which showed that 76%
of Americans support stricter laws on abortion. That
poll also showed that in December 2017, 63% of Americans
supported a ban on abortions after 20 weeks, an increase of
four percentage points from January 2017.
Planned
Parenthood faltering?
According to its own annual report, Planned Parenthood
performed 321,384 abortions in the US during its 2016-2017
fiscal year. This is a slight decrease from the 2015-2016
figure of 328,348. Moreover, it is the lowest number
since 2007. The organisation’s total revenue was $1.46
billion, with $543.7 million (37%) of that coming from
taxpayers. This represents a slightly lower
contribution in government funding from $554.6 million the
previous year. Despite these decreases, its total
number of customers was the same as last year, namely 2.4
million individuals.
The Trump Administration now has a golden opportunity during
2018 to show that its warm words about government defunding
of Planned Parenthood become a reality.
US Supreme Court candidates
In mid-November, the Trump Administration announced the
names of five new potential nominees for the Supreme
Court. They are Judges Amy Coney Barrett, Brett
Kavanaugh, Kevin Newsom, Britt Grant and Patrick
Wyrick. They are considered to both conservative and
pro-life. Perhaps we will hear of them in the near
future.
However, there are no current vacancies on the SCOTUS, but
three of the nine justices are 79 years old or older.
Of the liberals, Ruth Bader Ginsburg is 84, Anthony Kennedy
is 81 and Stephen Breyer is 79. Pro-lifers hope that
when a vacancy does arise, a Trump pro-life conservative
will steer the Court away from the last four decades of
liberalism, apparent in pronouncements on, for example, the
legalisation of abortion, homosexuality and same-sex
‘marriage’.
The Dutch can march too
On 9 December, on a cold and windy Saturday, an estimated
15,000 Dutch men, women and children packed Malieveld Square
in the centre of The Hague. They were there for the
25th ‘Mars Voor Het Leven’, the Silent March for Life, to
protest against abortion and to promote compassionate
options. Several pro-life organisations were in
attendance as well as representatives from Roman Catholic,
evangelical, Reformed and Pentecostal churches.
During 2017, four of the seven abortion clinics across the
Netherlands have closed down, including those in Amsterdam
and Maastricht – these closures were due to fraud
allegations totalling over 15 million euros. This has
given the Dutch pro-life movement an unprecedented
opportunity. The remaining clinics are overbooked and
pregnant women are looking elsewhere for help, so pro-lifers
have been there to offer desperate women life-affirming
alternatives. Already many lives are reported to have
been saved.
Pro-life win in Norway
In 2010, Dr Katarzyna Jachimowicz moved with her family from
Poland to Sauherad in Norway to respond to the country’s
shortage of medical professionals. She had 20 years of
experience and was a doctor of integrity and soon enjoyed
good relationships with her patients – she was able to
communicate with them in Polish, Russian and
Norwegian. Yet she would not refer them for abortions
and she would not insert intrauterine devices (IUDs), which
can act as abortifacients. Her employer had known
about her ethical stance and objections and accepted them
before hiring her. And none of these issues adversely
affected the functioning at her health centre.
However, in 2015, the situation in Norway worsened after the
government eliminated conscience protections for family
doctors. Then it became illegal for them to refuse to
supply any form of contraceptive, including the insertion of
IUDs, which are not considered to be abortifacient by the
government. Before firing her, in December 2015, her
employer, the municipality of Sauherad, tried to persuade
her to change her ethical stance. She refused.
Thus she became the first medical professional in Norway to
be sacked for exercising her conscience rights.
In June 2016, Jachimowicz sued the state on the grounds that
her rights had been violated and because her dismissal from
the state-run health care system was illegal. In
February 2017, she lost her first battle for the conscience
protection of family doctors. But on 24 November 2017,
a Norwegian appellate court found in her favour. This
court at Skien agreed with her and reversed the previous
decision of the court in Notodden. Her employer was
instructed to pay her fees of 600,000 Norwegian Krone (about
£55,000). Jachimowicz’s case is seen as a landmark in
Norway, marking the country’s first legal victory for health
carers’ freedom of conscience. Even so, the
municipality of Sauherad has appealed the ruling, moving it
to the Supreme Court. And Dr Jachimowicz has other
costs – the stress and strain of the case has caused her to
leave general practice and retrain as a psychological
counsellor.
Abortion in Poland
The European Union (EU) has warned Poland not to pass any
legislation banning the abortion of unborn children who are
diagnosed with severe congenital disabilities. On 15
November, the European Parliament (EP) adopted a resolution
initiating the formal process for rebuking an EU Member
State found to be in a ‘serious breach’ of their obligations
under the Treaty on European Union (TEU).
The EP alleges that Poland may be in violation of core EU
principles with respect to human rights and democratic
values. While the EP’s resolution primarily addresses
the row over the independence of the Polish judiciary, it
also condemns Poland for considering pro-life legislation
that would protect unborn children with disabilities.
It also calls on Poland to repeal a recent law, signed by
Polish President Andrzej Duda, which prohibited the
over-the-counter sale of the morning-after pill without a
prescription.
Meanwhile in early January, the Polish parliament rejected
proposed legislation to liberalise its abortion laws, voting
instead that proposals for tough, new restrictions should be
passed to a parliamentary committee for further
scrutiny. If enacted, this so-called ‘stop abortion’
bill would outlaw abortions carried out because of
congenital disorders of foetuses, such as Down’s syndrome.
The ruling Law and Justice party’s leader, Jarosław
Kaczyński, confirmed that the government would continue to
tighten the law. He said, ‘We will strive to ensure
that even in pregnancies which are very difficult, when a
child is sure to die, strongly deformed, women end up giving
birth so that the child can be baptised, buried, and have a
name.’ Introducing the proposed legal restrictions on
10 January, Kaja Godek of the anti-abortion Life and Family
Foundation told MPs that ‘we have come to parliament today
because we don’t want our hospitals turning into abattoirs.’
Miscellaneous
Don’t
say that
While free speech is at a premium in several sectors of UK
life, such as universities, newspapers and social media, it
has been tempting to look across to the Land of the Free
with jealous eyes. No more!
According to a report in the 15 December edition of The
Washington Post, the Centers for Disease Control and
Prevention (CDC), the US health protection agency, issued
guidance banning or restraining the use of seven little
words from government documents concerning the Centers’ US$7
billion budget. Were they expletives or
obscenities? No, they are ordinary nouns and
adjectives used in everyday speech. Here they are: vulnerable,
entitlement, diversity, transgender, fetus, evidence-based
and science-based.
What is the Trump Administration thinking of? A
spokesperson for US Health and Human Services tried to quell
the brewing storm and said that ‘recent media reports appear
to be based on confusion that arose when employees
misconstrued guidelines.’ Meanwhile, CDC officials
defended the move by saying that it was not censorship but
guidance on language that might be most effective in dealing
with conservatives in Congress. This is not a case of
fake news, at least, I don’t think it is!
The Nuremberg Code
On 20 August 1947, just over 70 years ago, and just six
weeks before I was born, the International Medical Tribunal
in Nuremberg delivered its verdict on the crimes of 23 Nazi
doctors and bureaucrats who had been involved in
concentration camp medical experiments. As part of
that judgement, it produced a 10-point set of rules now
known as the Nuremberg Code.
The post-World War II years were dominated by an
international push to formulate codes of human behaviour in
attempts to ensure that the horrors of war were never to be
repeated. Criteria were concocted for respect for
human rights, individual autonomy, informed consent, and so
on. The Nuremberg Code fitted this agenda.
Perhaps its greatest and most enduring rule concerns the
‘voluntary consent’ of every human research subject.
This decree has become a (nearly) global benchmark for the
ethical conduct of medical trials. Yet the Code was
initially largely ignored. It took some 20 years to
gain any significant impact. But even today it has not
been officially accepted in law by any nation, or as the
ethical guidelines by any medical association. The
truth is that it was eclipsed by the World Medical
Association Declaration of Helsinki in 1964.
For completeness, the principles of the Nuremberg Code can
be summarised as:
1] Voluntary consent is essential.
2] The results must be for the
greater good of society.
3] Should be based on previous
animal experimentation.
4] Should be conducted by avoiding
physical/mental suffering and injury.
5] No experiments should be
conducted if they might cause death / disability.
6] Risks should never exceed the
benefits.
7] Adequate facilities should be
used to protect subjects.
8] Conducted only by qualified
scientists.
9] Subject should always be at
liberty to stop at any time.
10] Scientist in charge must be
prepared to terminate the experiment when injury,
disability, or death is likely to occur.
The Code is part of a long history of attempts to regulate
the ethics and practice of medicine. Though none has
matched the robustness and durability of the ancient
Hippocratic Oath with its signature ‘do no harm’, the
Nuremburg Code has played its minor role. The medical
profession, with its propensity to do harm, still needs a
tough, broadly-defined set of rules to protect the rights
and well-being of human patients and research participants.
New Year’s honours 2018
I always scan the Honours lists at the New Year and on the
Queen's official birthday in June – no, I’m not looking for
my own name, though it is well known, at least within my
family, that I will accept nothing less than a
knighthood. On the other hand, I am more concerned,
and delighted, that my name is written in the Lamb’s book of
life (Rev. 21: 27).
However, I like to see good people honoured. I get a
warm little glow when I see the names of lollipop ladies and
couples who have fostered dozens, rather than the
long-serving tax official or the career politician.
Yet rarely do I see anyone’s name who can be regarded as
having worked, however remotely, in a pro-life
position. Having said that, and to expunge the thought
that I am part of the ‘anti-Christian conspiracy-theory
victim gang’, there have been a handful in the last decade
or so.
This December, two notable ‘baddies’ were honoured.
First, there was the 64-year-old Professor Robin
Lovell-Badge. He works at the Francis Crick Institute
in London as a Group Leader and Head of the Division of Stem
Cell Biology and Developmental Genetics. His CBE was
awarded ‘for services to genetics, stem cell research and
the public understanding of science'. Nobody doubts
his scientific skills – it is his ethical stance that is
disputed. He is a leading figure in UK scientific
policies, regulatory matters and public debates concerning
genetics, stem cells, human embryo research, gene editing,
mitochondrial donation and so forth. In February 2016,
it was his team who were granted the first UK licence to
edit the genomes of human embryos. He regards human
embryos as little more than biological material and is an
ardent supporter of their experimental usage, and hence
their inevitable destruction.
Second, there was Professor Cathy Warwick, who was elevated
to DBE 'for services to midwifery'. She has been
described as ‘a Scottish midwife, trade union leader, and
abortion rights activist.’ She was the chief executive
officer of the Royal College of Midwives (RCM) and still is
the chairwoman of trustees at the British Pregnancy Advisory
Service (bpas), which describes itself as ‘the leading
provider of abortion services in the UK with over 40
abortion clinics and sexual health centres in England, Wales
and Scotland.’ Warwick made headlines on 6 May 2016,
when the RCM issued a position statement explicitly
supporting the aims of the We Trust Women campaign with its
call to scrap the ‘cruel archaic’ abortion laws that
‘prevent women from making decisions about their own
bodies.’ In addition, that campaign sought the
limitation of conscience rights for midwives, and the
extension of the 1967 Abortion Act to Northern
Ireland. This most extraordinary dual role did not go
unchallenged. There were numerous calls for Cathy
Warwick to do the decent thing and resign from either the
RCM or bpas, or both. She retired from her RCM role on
1 September 2017.
'Discovery Day'
Here is an interesting little fact, with big
implications. Wednesday 17 January 2018 has been
dubbed 'Discovery Day'. On that day, more than at any
other time of the year, more women found out that they were
pregnant. The date falls just over two weeks after
‘National Babymaking Day’ on 2 January, which is the most
common day of the year for couples to try to conceive.
It is estimated that in the UK 10,000 women took pregnancy
tests on that Wednesday to see if the two blue lines
appeared.
It was also a wonderful day for pregnancy test manufacturers
because, apparently, women take an average of six different
pregnancy tests to ensure they really are expecting.
All this prenatal activity should act as a warning to the
NHS to prepare for a bumper busy time during September and
October in its obstetrics and gynaecology wards.