Update on Life Issues – October 2015
Abortion
The
Planned Parenthood affair
For
the
last few months, the abortion issue has been dominated by
one story – that of Planned Parenthood of America, commonly
known as simply Planned Parenthood. The mother
organisation, IPPF, International Planned Parenthood
Federation, has its roots in Brooklyn, New York, where
Margaret Sanger opened the first birth-control clinic in the
US. In 1921, she founded the American Birth Control
League which, in 1942, changed its name to Planned
Parenthood. IPPF now works in 170 countries worldwide,
with 30,000 staff and millions of volunteers. Its
mission includes, ‘… sexual and reproductive health and
rights concerns’, which is code for mass abortion. For
example, in the US, Planned Parenthood performs some 300,000
abortions annually. In the UK, the pro-choice Family
Planning Association, fpa, is a Member Association of the
IPPF.
During 2013, David Daleiden,
often described as an anti-abortion activist, founded the
Center for Medical Progress (CMP). He then set up a
bogus biomedical research company, called Biomax Procurement
Services, as a cover to enable CMP members to pose as buyers
of foetal tissues and organs. They set up a series of
undercover stings in which they secretly filmed Planned
Parenthood officials purportedly discussing the illegal sale
of aborted baby parts, foetal tissues, to medical
researchers for financial gain. In July 2015, the CMP
started releasing these videos allegedly showing examples of
these illegal transactions. The videos in question can
be viewed here.
The pro-life movement has used the affair to
expose the physical, ethical and financial horrors
associated with abortion.
David Daleiden accused Planned Parenthood of altering
its surgical abortion procedures in order to acquire the
higher priced intact foetuses and entire tissues, such as
brains and livers. He
has stated, ‘Planned Parenthood is a criminal organisation
from the top down and should be immediately stripped of
taxpayer funding and prosecuted for their atrocities against
humanity.’
The action has more recently moved from the
media and into the courts and government. The National
Abortion Federation is suing CMP and Planned Parenthood is
also considering legal action. In September 2015, a US
court ruled that Daleiden and the CMP must submit private
documents and details of the video stings along with their
full raw footage. StemExpress, the tissue procurement
company that works with Planned Parenthood and is featured
in some of the CMP videos, has also obtained a similar court
ruling. Congressional investigations have
started. There has been a concerted push to cut state
funding of Planned Parenthood, which currently amounts to
$0.5 billion of taxpayers’ money each year. A
defunding Bill was proposed in the US Senate, but it failed
to pass on 3 August. Planned Parenthood is now under
investigation by the House of Representatives' Oversight and
Government Reform Committee. A September interim
Memorandum from that Committee’s chairman, Jason Chaffetz,
stated, ‘Planned Parenthood and its affiliates have spent
millions in recent years on “blowout” parties, first-class
travel and “lucrative” salaries.’
By mid-October, Planned Parenthood had
announced that its health centres would no longer accept
financial reimbursement for procuring post-abortion body
parts. Big deal! The horror is that they still
find cutting up unborn children and salvaging their bits and
pieces to be an acceptable practice. Pro-life
organisations called this belated 'policy change' a PR stunt
and little more than a last-ditch effort to avoid
prosecution while retaining its massive funding from US
taxpayers. This affair is far from over - as they say,
‘the case continues.’
Sex-selection
abortions
In November 2014, Fiona Bruce MP
introduced her Abortion (Sex-Selection) Bill in the House of
Commons. Considerable
evidence had been previously produced by The Daily Telegraph
undercover reporters along with anecdotes from the general
public that abortions on the grounds of gender – typically
female – were illegally taking place in the UK. The Bruce Bill got
lost in a mire of procedural ambiguities. It was eventually
shuffled into the Serious Crime Bill. The only positive
outcome was that the Department of Health was mandated to
examine the various claims.
In
August
2015, the Department published its required report, Assessment of
termination of pregnancy on grounds of the sex of the
foetus - Response to Serious Crime Act 2015.
The document can be read here.
And its conclusion? ‘However, we
have found no substantiated concerns of gender abortions
occurring in England, Wales and Scotland.’ So,
gender-specific abortions occur elsewhere in the world,
but not in the UK. Do
you believe that? Statistics
rarely tell the whole truth.
Assisted Reproductive
Technologies
Adverse IVF incidents
Is all going well in the IVF
clinics across the UK?
Not entirely. In
September, the HFEA published its second annual report
entitled, Adverse
incidents in fertility clinics: lessons to learn. It covers the year
2014 and can be read here.
A total of 465 incidents were
reported. Of these, two were classified as grade A,
the most serious, with 166 grade B incidents and 232 at
grade C. Grade B incidents include events such as
severe or critical ovarian hyperstimulation syndrome (OHSS),
the loss of a patient's embryos and breaches of
confidentiality. Grade C incidents occur, for example,
where one of a patient’s ova may be rendered unusable but
others remain, so treatment is not completely futile.
And there were 65 other reports that were unclassified.
The second grade A incident took
place at the South East Fertility Clinic in February 2014. Seven patients
treated on the same day underwent ova collection followed by
successful fertilisation.
However, it was later noticed that none of the
embryos developed properly.
The HFEA concluded that they were probably placed in
petri dishes with 'sub-optimal media'. No pregnancies
resulted from the treatments and the Clinic offered the
affected patients another cycle of treatment free of charge.
Perhaps the above needs a little
context. The
total incidents reported represent approximately 1% of the
60,000 IVF treatments carried out by UK fertility clinics
each year. And
the numbers were slightly down on the previous year. Even so …
HFEA in trouble again
The most senior family judge in
England and Wales, Justice James Munby, has castigated the
HFEA and several IVF clinics for their ‘widespread
incompetence across the sector’ and ‘alarming and shocking’
failures that have left dozens of couples who had a child
through artificial insemination by donor (AID) in doubt
about whether the child legally belonged to both of them.
The Human Fertilisation and
Embryology Act 2008 and clinic licensing conditions require
that both partners be given information, offered
counselling, and sign consent forms before beginning
treatment to ensure that both become the child’s legal
parents. But 51
of the 109 clinics licensed by the HFEA had ‘anomalies’ in
their records, said Sir James Munby, president of the High
Court’s family division. These
included essential documents –
known as WP and PP forms – not signed, not fully completed, filled in by the
wrong person, or with missing pages. It is understood
that 85
other couples could have their parentage called into doubt
because of similarly inaccurate paperwork.
Sir James stated, ‘The picture
revealed is one of what I do not shrink from describing as
widespread incompetence across the sector on a scale which
must raise questions as to the adequacy if not of the HFEA’s
regulation then of the extent of its regulatory powers. That the
incompetence to which I refer is, as I have already
indicated, administrative rather than medical is only slight
consolation, given the profound implications of the
parenthood which in far too many cases has been thrown into
doubt.’ These
scathing remarks came as a result of cases brought by five
heterosexual couples and two same-sex couples who were the
victims of bureaucratic ineptitude. After the babies
were born the couples learned that they might not be the
legal parents. The judge
granted legal parentage to all the parents, saying that
they had already suffered greatly.
And the HFEA’s response
On 11
September, the HFEA issued the following response to the
above cases: ‘These hearings have no doubt been very stressful for
the families involved and today’s judgment is clearly
welcome news for them. They
rightly assumed that legal parenthood was beyond doubt;
finding out that it was not must have been very upsetting.
‘The law was changed
in 2009 to allow unmarried partners of women having
treatment with donor sperm to become the legal parent at
birth. Whilst
this only affects a small group of patients, that is no
excuse for getting it wrong. As
the regulator, we have worked hard to make sure that clinics
understand this complex aspect of the law, but we should
have done more to make sure clinics were getting it right.
‘After the first
case of this kind came to light, we asked clinics to review
all relevant patient records. We are working with
the clinics involved to make sure affected patients are
contacted and offered the support and advice that they need.
We have also
changed our approach on inspection to make sure that consent
processes in clinics are tightened up and that staff are
properly trained
‘We will review the
action we have already taken, alongside the Judge’s
recommendations, to minimise the risk of this happening
again. All
fertility patients have a right to expect that matters as
important as consent to parenthood are handled
professionally by their clinic.’
I can detect no sense of
contrition or apology, real or inferred, in this HFEA
statement. Perhaps saying 'sorry' to these people
would be too much of an admission of the regulator's
incompetence. Big-time administrators often have a
terrible record of human empathy. Just how inept is
the HFEA? Why
cannot it regulate properly?
Does it not understand the law? How far does this
‘widespread incompetence’ spread? Does it go beyond
this numerically tiny sector of AID into the enormous sphere
of IVF and embryo research?
Womb transplants
Around
one in 5,000 women are born without a womb, while others
lose theirs due to cancer or other medical conditions. The once imaginary
treatment of a womb transplant has now become a reality. In October 2014, a
36-year-old woman in Sweden became the world’s first person
to give birth after a womb transplant.
Now
doctors in London have been granted permission to carry out
the UK's first trial in which ten women will receive womb
transplants. If
successful, the first baby could be born in late 2017. Dr Richard Smith,
a consultant gynaecologist at the Queen Charlotte's and
Chelsea Hospital in London, who has been working on the
project for 19 years, will lead the transplant team.
The
procedure is not without ethical and practical problems. IVF, with all its
attendant bioethical predicaments, was used in the Swedish
trial. In
addition, immunosuppression drugs are required to prevent
the womb being rejected, but to avoid their harmful
long-term usage, the womb is surgically removed once the
birth has occurred. The
alternative remedies to such childlessness are surrogacy or
adoption – the latter is the only recommended route for the
morally sensitive.
Britain’s national sperm bank
waiting for donors
A change in UK law in 2005
removed anonymity for sperm donors and this is thought to be
the cause of a recent dearth of volunteers. Demand for donated sperm
has soared because more and more same-sex couples as well
as single and older women want children. The UK’s
answer has been the establishment of its first sperm bank, which was opened in
October 2014, at a cost of £77,000 at the Women’s
Hospital, Birmingham, amid much media razzmatazz.
One
year on, only nine men have registered as donors. The bank is now
planning a recruitment drive.
Its outspoken chief executive, Laura Witjens,
thinks that appealing to male pride with a ‘superman’
message may be an effective way to boost donations. She believes, ‘If
I advertised saying “Men, prove your worth, show me how good
you are”, then I would get hundreds of donors.’ Who is she
kidding? We
shall see by October 2016.
'Three-parent' IVF superseded?
This
contentious procedure, also known as mitochondrial donation,
approved by Parliament in February and thus making the UK
the first country in the world to allow the creation of
babies with DNA from three people as well as permitting
unethical germline genetic modification, may yet become
history. A
novel method has been reported, in Nature as
‘Metabolic rescue in pluripotent cells from patients with
mtDNA disease’, which can be read here.
Mitochondrial diseases, like muscular dystrophy, may
possibly have a new cure.
The
study, from the Oregon Health & Science University, has
shown that people suffering from mitochondrial diseases can
still produce healthy mitochondrial DNA, which may be used
to remedy the defects.
In other words, genetic material from a third person
may not be necessary. Mothers
at risk of passing on mitochondrial diseases may be able to
use their own healthy mitochondria to repair their ova.
The
researchers, led by the controversial and sometime maverick
Dr Shoukhrat Mitalipov, of the University’s Centre for
Embryonic Cell and Gene Therapy, showed that when skin cells
from patients with a mitochondrial disease were converted
back to induced pluripotent stem (iPS) cells, some of them
were free from mutations.
These corrected stem cells can then be multiplied and
transplanted back into the body. Exciting stuff? Yes, but so far
the work has been in vitro – it has yet to be tested
in animals. let alone human patients. And while the
technique using iPS cells is bioethically sound, the team
also used cells obtained by somatic cell nuclear transfer
(SCNT), the bioethically unsound cloning technique.
So you thought you knew about
human embryo development
OK, you know that when one human
sperm penetrates one human ovum, a one-cell zygote results
and a new human being is under way – that’s good GCSE
Biology. But
the wonder of this fertilisation marvel is amplified by some
research conducted in Sweden and published in Nature Communications
and available here.
The earliest hours of human
development are utterly fascinating. How does one cell
begin its journey to a full grown adult? How do the
zygote’s 23,000 genes control this development? About 24 hours
after the zygote is formed, it divides into two cells. At the end of day
two, there are four cells, and by day three there will be
eight. This is
the biological processes of cell division. And it continues
to produce the estimated 100 trillion cells of the human
adult. Alongside cell
division is the process of cell differentiation
whereby some of these cells become bone or hair, blood,
kneecaps, and so on, under the direction of these 23,000
human genes. But
this recent Swedish research has demonstrated that there is
not a genetic free-for-all.
Rather there is a tightly-ordered sequence of genetic
activity.
The Swedish team, headed by Juha
Kere of the Karolinksa Institute, found that only 32 of the
23,000 genes were switched on two days after fertilization. By day three, 129
genes have been activated.
Kere called these genes ‘the ignition key’ of human
embryonic development.
Yet so much is not known –
seven of these 129 genes were previously unknown. Some of these
unfamiliar genes were found to interact with ‘junk’ DNA,
which has long been thought to have no biological function.
So
early human development does seem to display an unexpected
parsimony. Ultimately, to
produce the fully-developed unborn child, thousands of genes
are involved, switching off and on in a complex
choreography, a biological ballet. But it seems that
on day one, only 32 genes start the motor and by day three
just 129 are needed to keep it running. Early
human life is indeed a fascinating mystery.
Understanding the biology of
these first few days of life could explain the possible
roles of so-called ‘junk’ DNA, it could explain the process
of induced pluripotent stem cell creation, it could explain
some forms of infertility, it could explain the genesis of
some genetic diseases, and so on. It’s important to
know – such a search for understanding is at the heart of
good science. Such searching is a wonderful,
God-given, human attribute.
Sadly,
there is a downside to this work. These insights
came at a bioethical price because the researchers used 348
single cells (oocytes and zygotes) and blastomeres
(3-day-old embryos), all of which had been apparently been
donated for this research.
Stem-Cell Technologies
Yet
another adult stem-cell treatment?
Thousands
of
people suffer from chronic pain caused by type 2 diabetes,
surgical amputation, chemotherapy and many other conditions
that current painkillers bring relief for only a short time. A simple stem-cell
injection may bring relief for more than a month.
A
paper by Ru-Rong Ji and his team at the Duke School of
Medicine in the Journal
of Clinical Investigation (abstract available here)
showed that injections of adult stem cells, specifically
bone marrow stromal cells (BMSCs), relieved neuropathic pain
caused by nerve damage in mice. Moreover, this
study elucidated the therapeutic mechanism – the injected
BMSCs translocate adjacent to the damaged nerve cells in the
spinal cord and secrete TGF-β1, a protein molecule known to
potently inhibit neuropathic pain.
Professor
Ji
commented, ‘This analgesic effect was amazing. Normally, if you
give an analgesic, you see pain relief for a few hours, at
most a few days. But
with bone marrow stem cells, after a single injection we saw
pain relief over four to five weeks.’ Now the work needs
to shift from mice to men.
Mitochondrial
donation regulations
In
mid-September,
the HFEA published new draft guidelines for mitochondrial
donation, or ‘three-parent’ IVF. The labyrinthine
regulations (see here)
will come into force on 29 October 2015 when the HFEA will
issue, ‘… a Clinic Focus article and Chair’s letter setting
out the final processes, systems and guidance for regulating
mitochondrial donation.’
There is still far from any
unanimous agreement that such potential therapies will be
safe, even advisable. Some
biologists think that ‘foreign’ mitochondrial genes from the
donor might interfere with the expression of the nuclear
genes of the host, in unpredictable, and perhaps dangerous,
ways. Then there is the ethical objection that this
sort of mitochondrial tinkering will lead to full-scale
germline manipulation – the old slippery slope
argument. ‘No’, says the HFEA. It maintains that
licence applications will be narrow and their practical
oversight will be strict. Oh yes? And how will
such crass comments prevent scientists trespassing into
immoral scientific endeavour? It's a mystery.
Embryonic stem-cell trial
The London Project to Cure Blindness was established a
decade ago with the aim of reversing vision loss in patients
with ‘wet’ age-related macular degeneration (AMD). In August, the
Moorfields Eye Hospital announced that the first surgery of
a novel treatment had been successfully performed on a
60-year-old woman patient.
So far no complications have been reported. This news was
greeted by an over-excited media suggesting that a miracle
had been performed, the blind will now receive their sight. The truth is that
any outcome in terms of visual recovery, in just this one
patient, will not be assessed until at least December.
Nevertheless, this surgical
progress has been sufficient to prompt a larger trial – ten
patients will now undergo the procedure over the next 18
months. This
involves surgically transplanting retinal pigment epithelial
cells, derived from human embryonic stem cells, into the
back of the diseased eyes.
This is not the first use of
embryonic stem cells in the UK. In 2012, patients with
Stargardt's disease were injected with embryonic stem
cells in a phase 1 safety trial carried out in the US and
at Moorfields.
But why use embryonic stem cells
for AMD? Some
40 AMD patients have already been treated at Moorfields with
adult stem cells taken from their own eyes. Even the lead
scientist of that trial, Professor Lyndon Da Cruz admitted,
‘We saw extraordinary recovery, with some people being able
to read again and drive, and that recovery being sustained
for years.’ But
he complained that using the patient's own stem cells was
complex and carried risks, and so the London Project has
also opted for this embryonic stem-cell trial. It is a
disappointing development.
Yamanaka
seeking
cures for the incurable
The
following
is an interesting excerpt from a recent keynote speech given
by Shinya Yamanaka, the discoverer of induced pluripotent
stem (iPS) cells, the winner of the 2012 Nobel Prize for
physiology or medicine, and
currently the director of the Kyoto University Center for
iPS Cell Research and Application (CiRA). It was
originally published on 24 September in Yomiuri Shimbun (The Japan News).
'In middle school and high school, I
participated in judo, and at university I played rugby, so
I suffered many injuries.
I had broken bones more than 10 times, and every
time I received treatment from orthopaedic surgeons. It was natural
that I wanted to become an orthopaedic surgeon after
graduating from medical school.
Through clinical experiences as a doctor, I
realized that many patients suffer from intractable
diseases or injuries such as spinal cord injuries – which can’t
be cured even by skilful orthopaedic specialists. I wanted to find
a cure for such patients in the future, and thought I had
to study basic medical science to do so.
After working as a medical intern for two
years, I entered graduate school, starting my career as a
researcher. After
four years at the school, I went to the United States to
receive more training as a researcher. There I could
learn a lot of important things. One of them is
the motto “Vision and Hard Work,” which I was taught as a
key to success.
My future “vision” is to provide cures for
people suffering from currently incurable diseases and
injuries, such as spinal cord injuries, by utilizing iPS
(induced pluripotent stem) cell technologies.
In the United States, I knew about embryonic
stem (ES) cells – a type of pluripotent cell created from a
mouse embryo. ES cells can be increased indefinitely and
transformed into various cells. I was fascinated
by their mysterious functions. Back in Japan, I
had a tough time as my research gained no one’s
understanding. It
almost made me give up on my research.
Around that time, however, researchers in the
United States succeeded in creating ES cells using human
cells. This
achievement brought a global rise in expectations for the
technology’s application to regenerative medicine, and I
was encouraged that my research might become of use. I later would
have my own laboratory at the Nara Institute of Science
and Technology, where I was given opportunities to advance
my research. There
is much opposition to human ES cell research because the
cells – created from a human embryo –
have the potential to grow to be a baby if they are placed
in a womb. So
my laboratory team set a goal of developing pluripotent
cells without using embryos.
We discovered genes that work as a switch for
somatic cells to transform into cells in a fertilized
egg-like phase. At
Kyoto University, we succeeded in creating iPS cells from
mouse cells in 2006, and from human skin cells in 2007.
We are working to apply the iPS technology
for two types of medical use. In the first instance –
regenerative medicine – we cultivate
cells in a healthy condition outside the human body and
transplant them into people suffering from illness. For the second – drug research and development –
we re-create disease conditions by using iPS cells to
figure out the cause of diseases and develop drugs to slow
disease development.
We publish papers on basic research, but our
final goal, and mission, is to realize clinical
applications of the technology.’
Euthanasia and Assisted
Suicide
Assisted
Dying (No. 2) Bill 2015-16
Friday 11 September was a
red-letter day. It
was the day of the debate and vote in the House of Commons
on this alarming Bill.
Anxiety was widespread and palpable. It was a Friday,
traditionally the day when MPs go home to their
constituencies. It
was a Private Member’s Bill, typically of minor importance
and of unlikely progress.
It was a free vote, and the ethical stance of the new
batch of MPs on any such conscience issue was entirely
unknown.
The Bill was sponsored by Rob
Marris, Labour MP for Wolverhampton South West. He had inherited
it from Lord Falconer’s recently miscarried Bill in the
House of Lords. Moreover,
Dignity in Dying, the pro-suicide group, has thrown its
considerable organisational and financial weight behind this
House of Commons attempt.
But the group became curiously quiet in the days
leading up to the Great Debate – had its lobbyists forecast
bad news? And
the media were also unexpectedly muted. The Sun came out in
favour of the Bill. Of
the medical journals only The Lancet declared
itself, in a weaselly, anti-Christian piece entitled
‘Fibbing for God’ by its editor-in-chief, Richard Horton, to
be mildly supportive. And
all this despite the emotive headlines generated during
August by the deaths of the healthy, 75-year-old, ex-nurse
Gill Pharaoh at the Lifecircle ‘clinic’ in Basel and the
terminally-ill, 68-year-old, mountain-climbing carpenter Bob
Cole at the Dignitas ‘clinic’ in Zurich.
On the day, as many as 85 MPs
had asked to speak. The
debate started at 09.49 and within a few minutes of Mr
Marris’s dogged opening remarks it became clear which way
the House was swaying – numerous points of order were raised
challenging his arguments and assumptions. And so the
opponents of the Bill continued to lay out their case. It was all
authoritative, polite and instructive.
At 14.07, after more than four
hours of debate, the vote was called. At 14.21 the
result was announced – Ayes, 118 and Noes 330, a majority
against the Bill of 212.
There was tangible relief. The Bill had
failed, danger had been averted, good medicine had been
reinstated, the vulnerable had been protected. The
astonishing margin of defeat was slightly greater than that
of 1997, when MPs last voted on the issue.
The
entire debate can be read here. There were many
notable orations. I
thought the finest was by Dr Philippa Whitford, the new SNP
MP for Central Ayrshire and a cancer surgeon. Here is the whole
of her speech, delivered without notes, as recorded in Hansard.
‘I do not think anyone
doubts the views that have made all of us give up a Friday
to be here; everyone is here because they are concerned
about the suffering of others and we want to alleviate it.
We just do not agree about how we should go about it.
The Bill’s weaknesses have been mentioned, such as the
problem of finding general practitioners who would write a
report. In actual fact, quite a lot would be willing to do
that, but not so many would be willing to be involved in
the act of assisted suicide. Where would the independent
expert be found? Some 96% of palliative care specialists
are utterly against this Bill. They object to the name of
it; they consider what they do is assisted dying, and what
this is is assisted suicide.
I do not want to talk about the small print, however.
That will be explored over the day. My objection is
basically in principle. Many Members will be aware of my
interest; as a breast cancer surgeon for 30 years, I
have been involved in the journey to death of many
patients, but as a doctor I have never considered that
death was a good treatment for anything, no matter what
was wrong with anyone.
People would choose such an option for lots of reasons:
the fear of being a burden, the fear of dying, and most
of all the fear of suffering. The responsibility to deal
with that lies with us. Who is making them feel that
they are a burden—is it their family or their friends,
or is it society? Who is letting them down in their
palliative care? It is us. As the hon. Member for Totnes
(Dr Wollaston) mentioned, the services are patchy in
some areas. Not everyone has access to palliative care,
but I started out in 1982 when women did not know when
they went into theatre that they had breast cancer
because we did not have the ability to diagnose it. I
worked for an eminent professor in Glasgow, and we lived
in the ward in those days, and I watched patients come
back from theatre having had the lump removed. If it was
cancer their breast was removed, and that was it—no
choice. They found out they had cancer by groping
themselves on the trolley, because if they had a lot of
bandages and a drip, that meant they had lost their
breast and they had cancer.
Watching people die of cancer was awful at that time.
They were cachectic, they were in pain, and we had very
limited hospice and very little palliative care support
in the hospital. But 30 years later that has changed.
Whereas 40% of patients would live 10 years then, now
80% do so. Our patients know exactly what operation they
are going in for. They have hours of discussion with us,
and until a few years ago I would have been involved in
their journey if that cancer came back, in their
palliation and in their terminal care.
That journey can lead to a beautiful death. The event
that had the biggest impact on me as a junior doctor was
the death of a lady whom I had looked after for many
months. When I came on to the ward that night, the
nurses said, “I think Lizzie’s going.” She was curled up
in her bed, obviously quite upset, and when I asked her
what was wrong, she said she was frightened and she did
not know what she had to do. I said, “You don’t have to
do anything. You just have to relax. You just have to
let go.” We had the family in. West of Scotland male is
not good on emotion or openness, so I took her son in
and I spoke to her again about what was happening to the
point where he could tell her that he loved her and how
much he was going to miss her. I went for my tea, and
when I came back she was sitting up holding court with
the whole lot of them. I thought, “Oh no, we’ve called
it wrong”, but she was gone in an hour, and it was
beautiful. That made me commit to working with cancer
patients. If I had not made it as a surgeon—which, as a
woman at that time, I was told flatly that I would not—I
would have gone into palliative care.
I have seen change in the journey for patients. We
heard the hon. Member for Mid Bedfordshire (Nadine
Dorries) describe the last two weeks of the life of her
friend, and that is something that we see
repeatedly—that the patient is ahead of the family. We
are always utterly open with patients. We no longer have
a situation in which a family member says, “Don’t tell
my mum. Tell me, but don’t tell her.” The patient will
always know, because the fear is that when they see
their death coming, they will know that everyone has
lied to them and they will be on their own.
My job was not just to look after the patient; it
was to look after the whole family. All these illnesses
are diseases of the whole family, and we want the family
to be left with the knowledge that they did everything
they could and were able to express their love at the
end of their loved one’s life. Things have changed for
cancer patients. I have not had a cancer patient ask me
for a quick way out, an escape, for decades. We need to
ensure that palliative care is offered to people with
degenerative illnesses, of which we are all afraid.
When the public support this measure, they are not
actually thinking about the last six months of a
terminal illness; they are thinking about Alzheimer’s,
about motor neurone disease and about Parkinson’s, none
of which the Bill would address. It is therefore
inevitable that this would migrate. As the hon. Member
for Totnes said, we should support palliative care and
we must ensure that it is available to people who are
dying, regardless of their illness. We need to change
our tone towards the people who live in our society, so
that old and vulnerable people no longer feel that they
should get out of the way.
All our horizons will narrow as we get older.
Someone who was hill walking when they were 20 might not
manage to do so when they are 80. I have seen patients
who are grateful to be at home being wheeled out on to
the patio in the sun and having a good blether with
their son who has come home from London. They consider
that a good day. We might consider it horrific, looking
at it in advance, but when we get there we will have
changed. We should support letting people live every day
of their life until the end, and make sure that, as
legislators, we provide the means for them to live and
die with dignity and comfort. We should not say, “When
you can’t thole [Scots for ‘bear’] it, take the black
capsule.” We should vote for life and dignity, not for
death.’
This was the eleventh time in the last twelve years that
the legalisation of assisted suicide has been attempted
and defeated in the UK. The Scottish Parliament and
the National Assembly for Wales have both recently
rejected the idea. Is this recent overwhelming
defeat at Westminster the end of the matter? No
way! True, the issue may not come to Parliament
again for perhaps the next five or ten years, but its
supporters will not admit defeat. The CEO of Dignity
in Dying, Sarah Wootton, described the result as an
‘outrage’ and scolded MPs for being ‘ridiculously out of
touch’. Supporters of assisted suicide will now
almost certainly pursue their cause, case by case, through
the Courts, though we all know that ‘hard cases make bad
law’. At least, for the time being, our legislators
have done their bit on what just happened to be the day
after we celebrated World Suicide Prevention Day.
That's nice!
Access
to Palliative Care Bill [HL]
To
bolster
the opposition to the Marris Bill, Baroness Finlay is
spearheading the above Bill in the House of Lords. It will, ‘Make
provision for equitable access to palliative care services;
for advancing education, training and research in palliative
care; and for connected purposes.’ Its three-page
details are here. Its First Reading
took place on 1 June and its Second Reading is scheduled for
Friday 23 October. Who
could object to its admirable intentions? We shall see.
The UK is number 1
In October, The 2015 Quality of Death Index was
published by the Economist Intelligence Unit (EIU) –
available to download here. It ranked
the quality of palliative care in 80 countries around the
world. The UK came first, with Australia and New
Zealand taking second and third places. It was no
surprise that wealthy countries cluster at the top and
many developing countries came near the bottom.
There were some shocks – Mongolia was 28th, Panama 31st
and Uganda 35th. Among the lowest rankings were
countries such as China (71st), which is facing the dual
difficulties of the slow adoption of palliative care and a
rapidly ageing population.
And, as if to reinforce the EIU’s assessment of the UK,
the Care Quality Commission (CQC) announced in mid-October
that more than 90% of England's hospices were rated as
‘good’ or ‘outstanding’. It is early days – so far
only 37 hospice services have been inspected, out of a
total of 324. Of those so far assessed, 10 were
judged ‘outstanding’, 24 ‘good’, two were deemed to be
requiring improvement, and one was rated
‘’inadequate’. Even so, the report highlighted
several examples of poor symptom control, poor
communication with patients and their families, as well as
inadequate generalist and specialist out-of-hours
services. But the results were described as
‘encouraging’ by Andrea Sutcliffe, the CQC’s chief
inspector of adult social care.
More needs to be done about end-of-life care, everywhere –
there are huge variations in its provision and quality,
even in the UK. May the UK continue to lead the way
forward – after all, we were the pioneers of the modern
hospice and palliative care movement.
Martin’s
case again rejected
In July, Lord Justice Elias and
Mr Justice Collins, sitting in the High Court, London,
rejected the case of the man known only as Martin or M. The 50-year-old,
who suffers from locked-in syndrome and is almost totally
paralysed, argued that the guidance given to doctors by the
General Medical Council (GMC) unreasonably stops him being
given medical help to die.
The Court heard that in order
for Martin to travel to a suicide ‘clinic’ abroad he needs
to provide details of his medical history. But doctors are
unwilling to supply such documentation for fear of assisting
in his suicide. The
GMC guidance says that when a patient raises the idea of
assisted suicide, a doctor must listen and discuss, but
cannot assist the person to die. The judges ruled
that this guidance is lawful because ‘aiding and abetting
suicide’ is a crime in the UK, and they dismissed Martin’s
case. An appeal
is expected.
The
Nicklinson-Lamb
case also again rejected
The latest episode of this
long-running saga involving the deceased Tony Nicklinson,
his wife Jane, as well as Paul Lamb, was enacted in
mid-July. The
European Court of Human Rights in Strasbourg found that this
combined legal challenge, based on Article 8 of the
Convention, was 'manifestly ill-founded’ and declared it
‘inadmissible'. In
other words, the UK’s prohibition of assisted suicide, as
detailed in the Suicide Act 1961, is not a violation of
human rights.
The case of Tony Nicklinson has
now been heard in the four highest courts available to UK
citizens, and all four have pronounced similarly, namely, the
decision
to amend laws on assisted suicide belongs to national
legislators. Bluntly -
it is for the UK Parliament to decide. And it did so on
Friday 11 September 2015.
USA and Elsewhere
California
legalises assisted suicide
On Friday 11
September, the California Senate voted 23 to 14 to allow
doctors to prescribe life-ending medication for some
patients. The bill needed final ratification by the
Governor, Jerry Brown, who had previously given little
indication of his intentions.
The California
Governor and former Jesuit seminary student, Jerry Brown,
who signed the new law into effect, issued an accompanying
statement. It
read in part, ‘I have carefully read the thoughtful
opposition materials presented by a number of doctors,
religious leaders and those who champion disability rights. I have considered
the theological and religious perspectives that any
deliberate shortening of one’s life is sinful. I have also read the letters of those who
support the bill, including heartfelt pleas from Brittany
Maynard's family and Archbishop Desmond Tutu. In addition, I
have discussed the matter with a Catholic bishop, two of
my own doctors and former classmates and friends who take
varied, contradictory and nuanced positions. In the end, I
was left to reflect on what I would want in the face of my
own death. I do not know what I would do if I were
dying in prolonged and excruciating pain. I am
certain, however, that it would be a comfort to be able to
consider the options afforded by this bill. And I
wouldn’t deny that right to others.’
The
Pain-Capable Unborn Child Protection Act
In May, the House of Representatives passed
this bill, which would ban most abortions after 20 weeks
nationwide, with a bipartisan 242 vs. 184 vote. Then Senator
Lindsey Graham introduced the bill into the Senate in June.
On 22 September, the bill
received a majority of votes, 54 vs. 42, in the
Republican-controlled Senate.
But it fell short of the required 60 votes to
overcome a Democratic filibuster.
‘It is a big disappointment that our elected
officials did not pass the overwhelmingly popular, common
sense, late-term abortion ban today,’ said Jeanne Mancini,
President of the March for Life Education and Defense Fund. She pointed out
the poignant irony that, ‘In the words of Pope Francis (who
was visiting the nation’s capital that very week), “The
level of progress in a society is measured by its capacity
to safeguard life, above all in its most fragile stages.” As a country we
would flunk this progress test today. America is called
to defend life. And
our senators are elected to represent their people, not
extremist views.' She
continued, 'The fight is not over. Similar to the
partial-birth abortion ban, this will take time. But we will
succeed.’
Abortions
in Texas and Wisconsin and Ohio and …
Texas, like several
other states, has over recent years passed pro-life abortion
laws. These
have included such provisions as a 24-hour ‘cooling off'
period, mandatory ultrasounds, admitting privileges to
nearby hospitals for all abortionists as well as health and
safety upgrades for their facilities.
Are these new laws working? In August, the Texas
Department of State Health Services (DSHS) reported that 63,849 abortions were performed
in Texas
during 2013. This
was 4,449 fewer than in 2012, and down from more than 77,000
in 2010.
And similar
decreases are being reported from other states. For example, in
Wisconsin, abortion is 10% down, in Ohio it is 8.7%, in
Pennsylvania it is 7%, in Vermont it is 12% and in North
Dakota it is 11% down on the previous year. The causes of
these reductions are disputed, but for many the pro-life
laws are getting credit.
Whatever the true explanation, unborn lives are being
spared.
Another
winner against ObamaCare
The world’s largest
privately-owned publisher of Christian books and Bibles has
won its case for exemption from the US Government’s health
insurance mandate, the controversial Affordable Care Act,
also known as ObamaCare, with its insistence that employers
must pay for abortifacient ‘contraceptives’, such as the
morning-after pill, for their employees.
Lawyers for the Illinois-based
Tyndale House Publishers argued that companies should be
allowed to operate in line with their religious or moral
convictions. In
July, a federal district court issued a permanent injunction
in favour of Tyndale. They
can now do business according to the Book they publish! It was back in
July 2014 that Hobby Lobby, a Christian-run business won its
pioneering case against the overbearing mandate in a
landmark ruling by the United States Supreme Court.
The
Polish
government backtracks
Across the whole of Poland,
schoolchildren are taught lessons within a pro-family
subject known as WDZ, which translates as ‘Upbringing for
Family Life’. Its
aim it to prepare young people for marriage and family life. On 9 July, the
Education Minister, Joanna Kluzik-Rostkowska, announced that
the
government wanted to introduce explicit sex education into
the syllabus of the nation's schools.
A coalition of 26 pro-family
groups came together to oppose the changes. A protest rally in
Warsaw attracted thousands of parents. Before the rally took place, Kluzik-Rostkowska
sought reconciliation by declaring that, ‘… work on changing
the WDZ curriculum hasn’t started yet.’ But Polish parents
have not been pacified and are under no illusion that their
children remain at risk.
The vigilance and resistance continues.
Euthanasia
propaganda
for Dutch schools
On 3
September, the Hyperion Lyceum, a secondary school in
Amsterdam, became the first ever to use a new educational
kit developed by the Dutch ‘Voluntary End of Life
Association’ (NVVE).
Far
from being a neutral presentation, the kit unashamedly
pleads for euthanasia and aims to make it acceptable among
young people. Many
would call it a euthanasia propaganda tool. Indeed the kit’s
title
is ‘Euthanasie Doodnormaal’, which translates as
‘Euthanasia: Dead-normal’.
To date, there has been no protest, official or
unofficial, regarding the NVVE's action. How different are
the cultures of Holland and Poland.
Canadian
euthanasia
In February 2016, Canada
is set to drop its criminal prohibition against doctors
who aid the terminally ill to die, following a ruling by
the Supreme Court of Canada last year. But, except
for Québec, no Canadian province yet has a legal framework
in place to regulate the practice.
Miscellaneous But Still
Important
A
new gene-editing technique – CRISPR-Cpf1
CRISPRs (clustered
regularly interspaced short palindromic repeats) exist in
bacteria as a kind of immune system that identifies and
excises invading viral DNA.
Researchers have now adapted this protocol to edit
genes and genomes virtually at will. In essence, DNA can be
cut out and spliced in, anywhere and everywhere, and
easily, and cheaply. In theory, genome
editing could repair the mutations responsible for all
heritable human diseases. First there was CRISPR-Cas9.
Already the CRISPR-Cas9 technique is
revolutionizing genetic research – scientists have used it
to engineer crops, livestock and even edit the genomes of
human embryos. The
latter was reported in the April issue of Protein & Cell
by a team headed by Junjiu Huang at the Sun Yat-sen
University in Guangzhou. This key paper can be read
here.
Then
in
September came the improved version, CRISPR-Cpf1. In a paper published
in Cell, Feng Zhang and his team at the Broad
Institute in Cambridge, Massachusetts, reported the
discovery of a protein called Cpf1 that may make CRISPR even
simpler and more precise.
The scientists searched a range of bacteria and
found two Cpf1 enzymes that were capable of cutting human
DNA. Whereas
Cas9 requires two RNA molecules to cut DNA, Cpf1 needs only
one. Cpf1 also
cuts DNA at different places and in a different way, making
it more useful. Cas9
cuts both strands of DNA at the same position, leaving
behind what are known as ‘blunt’ ends. Cpf1 leaves one
strand longer than the other, creating a 'sticky' end, which
is strategically more advantageous because it allows the
insertion of DNA to be more controllable, more frequent and
more efficient. This
field of research is hot – very
hot – and no doubt more and better techniques will
be discovered in the near future. Radical gene
editing has undoubtedly arrived.
Gene
editing in pigs
A long-term dream of many medical scientists
has been the use of pigs in which to grow human organs for
transplantation – it is called xenotransplantation. But rejection by
the human immune system and infection by porcine endogenous
retroviruses (PERVs) have been major stumbling blocks.
On 5 October, at a
meeting of the US National Academy of Sciences, George
Church of Harvard Medical School in Boston, Massachusetts,
announced that his research team had used CRISPR-Cas9
to inactivate as
many as 62 PERVs in pig embryos (published here). In addition, the
group modified more than 20 genes in pig embryos that encode
for proteins known to trigger a human immune response or
cause blood clotting. This is preliminary work and the
edited pig embryos have yet to be implanted into mother
pigs. When that is accomplished, the researchers
hope they will produce suitable non-human organ donors.
Analogous,
but far more bizarre, news come from the Beijing Genomics
Institute, located in Shenzhen. It has created
so-called micropigs by gene editing a small breed of pig
known as Bama. The
gene-editing technique they used employed TALENs
(transcription activator-like effector nucleases) rather
than CRISPRs to disable certain genes. In
September, the Institute announced that it would start
selling these little piggies as pets. They will cost
about £1,000 and when mature, they will weigh about 15 kg,
akin to a medium-sized dog.
The ethics and practice of gene editing
Like
all new radical technologies, CRISPR creates ethical
concerns. Herein
is the potential to modify all of nature, in particular
human beings, beyond our imagination. But if gene editing
becomes acceptable for medical purposes, to cure human
diseases, will it also be used for non-medical purposes,
to introduce, enhance or eliminate human traits?
Many
are concerned. For
example, on 12 March, in Nature, Edward Lanphier,
chairman of the Alliance for Regenerative Medicine in
Washington DC, and four co-authors called on scientists to
agree not to modify human embryos – even for research
purposes.
On 10 September, the influential
Hinxton Group, ‘a global network of stem-cell researchers,
bioethicists and experts of policy and scientific
publishing’, issued a 9-page forthright statement in
favour. It declared, ‘Research involving editing the
human genome, including research with human embryos, is
essential to gain basic understanding of biology and germ
cells and should be permitted.’ The full statement can
be read here. While the
Group makes a clear distinction between research and
clinical application, everyone knows that such bioethical
lines are easily blurred, simply crossed and readily
forgotten.
Indeed,
the
momentum for trying human gene editing is already evident. For example, on 18
September, researchers, led by Kathy Niakan from by the
London consortium of the Francis Crick Institute, applied to
the HFEA for a licence to genetically modify human embryos
by CRISPR-Cas9 in order to further understand the genetic
causes of miscarriage during pregnancy. Editing the
genomes of human embryos for a therapeutic use, for
instance, to eradicate a genetic disease, is illegal in the
United Kingdom, but research work is permissible, with a
licence. Of course, the
human embryos used would be ‘small', surplus to
requirements, donated, destroyed before 14 days and never
used for reproductive purposes. Of course!
But
licenced by the HFEA? Oh
no! That
incompetent regulatory body that from 1990 has sanctioned
the ill-famed and arbitrary 14-day rule, and approved every
application for destructive human embryo research, and in
2008 endorsed the creation of the now out-moded ‘human admixed embryos’, and in 2015
authorised the use of mitochondrial DNA replacement
techniques, aka, ‘three-parent’ IVF. Now the HFEA is
broadening its remit to include human gene editing. Will it say
‘No’? I shall
eat yet another of my hats if it does!
What
is required is public debate, wide and serious, about these
new technologies and the imminent prospects for genome
engineering, not least in terms of human medicine, ‘designer
babies’ and beyond. There have already been calls from
US scientists for a temporary pause to this sort of work. Such a
moratorium would engender both thoughtful caution and
public engagement.
The risk of harming future generations is far too
serious to ignore. There is already wild talk about where the first
CRISPR baby will be born – Japan, India or China? In
December, members of a group of academic societies from
America, Britain and China are hosting a meeting in
Washington DC to thrash out some of these fundamental
issues. I hope
they are prudent.