Members of the Inquiry took oral and written evidence from a total of 299 individuals and organizations, including Affinity, and produced a list of 17 recommendations.  The latter included more support and information for parents with a new diagnosis of a suspected disability in their unborn child, more funding for neonatal palliative care, better training for health professionals dealing with prenatal diagnosis, and a welcome emphasis on adoption as a positive alternative to abortion for disability.  In addition, there was a call for post-mortems for abortions conducted after 24 weeks to ensure the correct operation of the Act and to improve future medical diagnoses.

The Inquiry’s most robust and radical conclusion was, ‘We recommend that Parliament reviews the question of allowing abortion on the grounds of disability and in particular how the law applies to a fetus beyond the age of viability (currently 24 weeks).  Parliament should consider at the very least the two main options for removing those elements which a majority of witnesses believe are discriminatory – that is either reducing the upper time limit for abortions on the grounds of disability from birth to make it equal to the upper limit for able bodied babies or repealing Section 1(1)(d) altogether.’

The Inquiry has highlighted significant anomalies and discriminations concerning Ground E abortions.  The hope is that Parliament will be alerted to act, or will it be content to bury the evidence?

This new Act was introduced largely as a result of legal ambiguity surrounding the tragic case of Savita Halappanavar, a 31-year-old Indian dentist, who was admitted to hospital in Galway in October 2012.  She was miscarrying and her request for an abortion was refused because her life was not in danger.  She died a week later from septicaemia.

This landmark change in Irish law has not been part of the democratic process.  The government was determined to pass the Bill and many Fine Gael, Labour and Sinn Fein politicians were left with no choice but to vote against their conscience or lose their jobs.  Some of these politicians had even made pre-election promises to their electorate not to support any legislation which would introduce abortion into Ireland. 30 July 2013 was indeed a sad, sad day for Ireland.

But this is just the entrée.  You know it will not stop there, it never does with bioethical issues.  Once permitted, ‘three-parent’ IVF will be used not only to treat or prevent disease, but rather to fulfil lifestyle desires.  For example, it could assist polyamorous threesomes or lesbian couples to have children biologically related to all partners involved.

The couple were eventually selected by a pregnant mother – they met and bonded.  When Sarah accompanied the mother for an ultrasound scan, there was a shock – she was carrying triplets!  A few months later, Joel, Hannah and Elizabeth were born and welcomed into the Justice family. But that is not the end.  Just one week after the triplets were born, Sarah found out she was pregnant – with twins!  Sarah and Andy are now expecting a girl and boy this coming January.  From 0 to 5 in a year.

The three lessons.  The couple wanted children – good desire.  The couple turned from IVF to adoption – good choice.  They helped a pregnant mother – good deed.

A less than heart-warming story.
Back in 2010, the UK government said it would axe the Human Fertilisation and Embryology Authority (HFEA) as part of its promise to cut the quangos.  On 17 July 2013, the Department of Health announced that the HFEA will be retained as the independent regulator of assisted reproduction and embryo research across the UK.  The hope was that the HFEA would be disbanded and replaced by something more bioethically robust.  So, sadly, it is business as usual.

These are very preliminary results, but still fascinating.  And the approach has been corroborated by Chinese scientists in the July edition of Stem Cell Regeneration.  Their work, published as Generation of tooth-like structures from integration-free human urine induced pluripotent stem cells, generated tooth-like structures from human urine induced pluripotent stem cells (ifhU-iPSCs).  They first collected USCs, differentiated them into ifhU-iPSCs, cultured them into epithelial sheets, which were then recombined with mouse dental connective tissue, which differentiated into enamel-secreting cells in tooth-like structures, which possessed physical properties similar to those found in normal human teeth.  The expectation is that one day, this technology will allow the regrowth of lost teeth in human patients.  Can you believe it?

And the taste?  An Austrian food researcher, Hanni Ruetzler said, ‘I was expecting the texture to be more soft ... there is quite some intense taste.  It's close to meat, but it's not that juicy.  The consistency is perfect, but I miss salt and pepper.’  And a US food writer, Josh Schonwald said, ‘The mouthfeel is like meat.  I miss the fat, there's a leanness to it, but the general bite feels like a hamburger.  What was consistently different was flavour.’

Professor Post claimed, ‘… we are going to present the world's first hamburger made in a lab from cells.  We are doing that because livestock production is not good for the environment, it is not going to meet demand for the world and it is not good for animals.’  The extremist animal welfare campaigning group, People for the Ethical Treatment of Animals (Peta), predicted that, ‘[Laboratory-grown meat] will spell the end of lorries full of cows and chickens, abattoirs and factory farming.  It will reduce carbon emissions, conserve water and make the food supply safer.’  Yet, with an inexorably growing global demand for meat and the cost of this burger estimated to be £215,000, none of these prospects seems either logical or practical.

First, the on-going work by a team at Moorfields Eye Hospital and University College London has demonstrated that the part of the eye which actually detects light can be repaired using embryonic stem cells.  Experts eagerly, and perhaps over-excitedly, described this as a ‘significant breakthrough’ and a ‘huge leap’, which will make human trials ‘a realistic prospect’.

The work headed by Jacob Hanna and his colleagues was published in the September issue of Nature with the title Deterministic direct reprogramming of somatic cells to pluripotency.  It was shown to occur with both mouse and human cells.  This new technique should allow the production of larger volumes of stem cells and therefore hasten the development of new, potential treatments for humans.

Hongkui Deng and his team at Peking University in Beijing began to screen 10,000 small molecules to find chemical substitutes for the Oct4.  After years of searching they found that mouse iPS cells could be generated by the addition of a combination of seven small-molecule compounds, rather than any genes.  Their findings have been published as Pluripotent Stem Cells Induced from Mouse Somatic Cells by Small-Molecule Compounds in the July copy of Science.

This chemical reprogramming strategy makes the use of iPS cells even more attractive for safe, human clinical applications.

These scientists managed to create functional human livers from human iPS cells by transplantation of liver buds created in vitro.  These liver buds remarkably organized themselves into liver tissues that could perform mature liver-specific functions, such as protein production and drug metabolism.

This is the first report of the generation of a functional human organ from iPS cells.  Of course, treatments for patients are some years in the future, but this is a crucial proof-of-concept demonstration that organ-bud transplantation could become a new and promising approach for regenerative medicine.

However, the Center for Reproductive Rights promised a court challenge even before the Governor’s ink was dry.  And on 22 July, District Judge Daniel Hovland granted a temporary injunction – he ruled that the new law was ‘clearly unconstitutional’.  He wrote, ‘The United States Supreme Court has unequivocally said that no state may deprive a woman of the choice to terminate her pregnancy at a point prior to viability.’

During the summer months, similar pro-life laws restricting access to abortion were enacted in states, such as Alabama and Wisconsin. However, legal challenges rapidly followed and judges swiftly issued temporary injunctions against most of their stipulations.  Similarly, in Mississippi, a judge allowed one such legal proviso to go into effect, but barred others from penalizing the state's only abortion facility.

Yet some such pro-life bills have survived intact.  For example, on 1 October, a new North Carolina abortion law came into effect.  It restricts insurance coverage of abortions – except in cases of rape, incest or medical emergency – it prohibits sex-selective abortions, it requires doctors to be present for the entire abortion procedure, it sets new standards that abortion clinics must meet in order to continue in business and it allows any care worker, not just doctors or nurses, to opt out of performing abortion procedures.

Now comes news that some political commentators think that the Supreme Court will review the abortion-providing, legal monolithic decision of Roe v. Wade within the next two years.  For example, American University political science professor Karen O'Connor, who supports abortion-on-demand, has recently told ABC News, ‘I think we are going to see Roe overturned.  I’m thinking 2015.’  She considers that the number of cases ‘pending in the circuit courts’ makes it more likely the justices will take up a challenge to Roe.

Moreover, she senses that people no longer believe that viability – set by Roe v. Wade as 28 weeks, but later revised to 24 weeks – is the only criterion that should limit when a woman can procure an abortion.  A majority of people now consider that abortion should not be allowed if the child is capable of feeling pain, which, according to some experts, could be no later than 20 weeks.  Bills forbidding abortion after that point have already been passed in 13 US states as well as in the US House of Representatives.  Furthermore, there has been a public outcry over the trial of Kermit Gosnell and his ‘House of Horrors’ abortion facility, in addition to the gruesome practices of other late-term abortionists – these have helped change public opinion.  And according to Peter Hoffa, American history professor at the University of Georgia, ‘There are four members [of the nine] of the Court now who feel that Roe v. Wade was wrongly decided.’

Is the stage being set for a showdown? And if Roe v. Wade falls ……

The question is, what will replace it?  It is not as if there is some wonderful, untried system of end-of-life care waiting to replace it.  The basic building blocks of proper palliative care are already known and implemented in many places.

According to Norman Lamb MP, Minister of State for Care and Support, the LCP will be replaced by ‘… a personalised care plan backed up by condition-specific good practice guidance and a named senior clinician responsible for its implementation.’  The 61-page review with its 44 recommendations is a decent bureaucratic start, but it will not be effective unless good training, adequate resources and a staff commitment are its practical foundations.  We shall see.

That might have been regarded as the end of the matter as far as challenges via the courts were concerned.  But not so.  Along came the case of Paul Lamb, a 57-year-old former lorry driver from Leeds, who has been almost completely paralyzed for the last 23 years after a road accident.  He apparently suffers constant pain and describes his life as, ‘tedious, monotonous and pointless.’  But he is not terminally ill and therefore the folk from the Dignity in Dying organisation stay away from his case because it is beyond their advocacy remit.

Paul Lamb was given permission to join the anonymous man known as ‘Martin’ in the continuing legal battle initiated by Tony Nicklinson in the hope of asking a doctor to end their lives.  However, on 31 July 2013, their case was dismissed by the three judges at the Court of Appeal.  In other words, their challenge to change the law on murder was rejected.  But Martin’s case was partially upheld, by a 2 to 1 judgement.  The Director of Public Prosecution (DPP) was ordered to clarify the role and the degree of support that healthcare professionals could provide for their clients before prosecutions were likely, an example of the so-called class two cases.  The DPP is expected to appeal this decision at the Supreme Court this autumn.

The three cases of Nicklinson, ‘Martin’ and Lamb are tragic and we must all be moved with compassion for them.  But the simple truth is this – current laws exist to protect the vulnerable, the disabled, the terminally-ill and all elderly people.  Any changes to the Suicide Act 1961 or the Murder Act 1965 would expose such people to greater burdens and considerable coercion, which might lead to their wishing to end their lives prematurely.

Gene therapy appears deceptively simple – trim off a rotten section of the patient’s genome and replace it with a good piece.  It is a bit like repairing a leaking pipe in a central heating system.  Only it is not.

This story is about somatic gene therapy, the bioethically-acceptable sort, not germline gene therapy, the nasty eugenic sort.  The first approved clinical trial of somatic gene therapy started in the USA in September 1990.  The target disease was severe combined immunodeficiency (SCID) and the patient was four-year-old Ashanti DeSilva.  The treatment worked, almost.  But the following two decades of gene therapy were disastrous, patients died and some contracted cancers.  The Cinderella of medicine became an ugly sister – we were promised a crock of golden cures, we got a can of deadly worms.

Both studies used lentiviral vector transduction.  This involves the collection of a type of stem cell from the body, adding some good, therapeutic genes using a delivery system (or vector), which has been safely tweaked from some HIV components, and putting the modified cells back into the patient.  Lentiviral vectors have been previously used to treat patients successfully in France with the diseases adrenoleukodystrophy and β-thalassaemia.  The Science papers reported the results of trials for two more life-threatening diseases.  First, metachromatic leukodystrophy (MLD), a genetic disease that affects lipid metabolism is caused by a lack of the enzyme arylsulphatase A (ARSA) and affected children can die within a few years.  Second, there is Wiskott–Aldrich syndrome, which is primarily a disorder of the blood-forming tissues affecting mainly boys and leading to a defective immune system.

In the first trial, the team collected haematopoietic stem cells from the bone marrow of three children with MLD.  These blood-making cells were exposed to an ARSA lentiviral vector and the altered cells transfused back into the young patients who had previously received a course of chemotherapy to suppress their immune systems.  This treatment is known as autologous transplantation with myeloablative conditioning.  The expectation is that the new, ‘corrected’ cells would supply the missing ARSA enzyme.  Indeed, even after two years, more than 60% of the blood cells expressed ARSA concentrations ten times that of normal.  The disease was arrested in all three patients.  They now attend school.

In the second trial, a similar approach was taken but with less myeloablation and more immunosuppression.  Nevertheless, it too worked with between 25 and 50% of the blood cells expressing the lentiviral vector.

Why the successful outcomes?  First, the lentiviral vectors are a vast improvement on previous vectors used in gene therapies.  Second, both trials used relatively high concentrations of these vectors, and they are potent, easily purified and adaptable.  Moreover, the lentiviral vectors showed no signs of activating cancer genes as their predecessors had done.