Jubilee of the Sick and Health Care Workers

 The days 5th-6th April 2025 are being marked by the celebration of the Jubilee for the Sick and Health Care Workers. One feature of these days is an evening conference dedicated to considering how palliative care can bring hope to patients who are terminally ill and to their families, hosted by the Pontifical University of the Holy Cross: Hospice=Hope. This report at the Jubilee 2025 website includes an account of a wide range of events that will be taking place across Rome during the Jubilee addressing such issues as the encouragement of blood donation, promoting awareness of issues around addiction and including moments of prayer and Eucharistic adoration: 20 000 people flock to Rome for Jubilee of the Sick and the World of Healthcare.

To reflect on this Jubilee we can take two motifs, one from Pope St John Paul II speaking to the sick in Lourdes in 1983, and the second from the opening words of Pope Francis' message for the World Day of the Sick in 2023:

Before all suffering, those in good health have a first duty: that of respect, sometimes even of silence.... Neither fair, nor unfair, suffering remains, despite partial explanations, difficult to understand and difficult to accept, even for those who have faith.

Illness is part of our human condition. Yet, if illness is experienced in isolation and abandonment, unaccompanied by care and compassion, it can become inhumane.

 When we look at the experience of illness in the life of Blessed Chiara Badano (known in the Focolare by the name "Luce", light), we can see something of both of these motifs. What we can also see is that accompaniment works in two directions: not only did Chiara's parents accompany Chiara in her illness but, in a very real sense, Chiara accompanied them during that time. It was an experience that they lived together. The two most remarkable aspects of Chiara's last weeks of life were, firstly, the extent to which, though unable to leave her bed, she kept in touch with friends from the Focolare movement; and, secondly, her refusal of morphine so that she could remain lucid and offer her suffering to Jesus, as she had no more than that to offer. Chiara exemplifies the three "small lights" - knowledge of the situation, acceptance and oblation - that Pope St John Paul II speaks of during his address to the sick in Lourdes. A full account of Chiara's life can be found here: Chiara Luce Badano - a radiant life. My own earlier posts about Chiara can be found here: Chiara Luce Badano.

Few of us will live the charism of an ecclesial movement with the depth and to the extent that Chiara Badano was able to do. The way in which she lived the time of her illness manifests a formation in that charism that, when her illness occurred, meant that she was able to live it to a heroic extent. 

Professor Jerome Lejeune provides us with a testimony of life of a doctor whose approach to his patients (and their parents) was one of profound respect. His daughter gives an account of the experience typical of families that sought his care when a new born had been diagnosed with Downs Syndrome, with the observation that it was a story they had heard countless times (Clara Lejeune, Life is a Blessing, p.35):

.. we went off to see this famous professor in a big hospital in Paris. It was both intimidating and reassuring. At the same time we thought to ourselves that it was no use. After all, the child's life was ruined.

The professor greeted us with a smile. He was courteous, friendly, but respectful. He turned to the baby, asked his name, and said to him, "Little Pierre, will you come with me?". He took him in his arms, asked the mother to put on a hospital gown, and offered her a seat. She sat down; he put little Pierre in her arms, sat down across from her and the father, and with a stethoscope examined the  child on his mother's lap. For us these simple gestures were like a revelation. It wasn't a patient this doctor was examining; it was our child.

Then he explained everything. What this illness is, what the future will be for the child and for us. He reassured us, responded to all our questions and fears.

Before leaving us he said to us, "If you wish, for your next appointment bring his older sister along. They, too, have the right to know and to understand." We left with our baby, all of us much calmer. He helped us to discover our love as parents.

In the Bull of Indiction (n.11) for the Jubilee Year, Pope Francis identified the sick as being among those to whom a particular sign of hope should be shown in the Jubilee year:

 Signs of hope should also be shown to the sick, at home or in hospital. Their sufferings can be allayed by the closeness and affection of those who visit them. Works of mercy are also works of hope that give rise to immense gratitude. Gratitude should likewise be shown to all those healthcare workers who, often in precarious conditions, carry out their mission with constant care and concern for the sick and for those who are most vulnerable.

Inclusive attention should also be given to all those in particularly difficult situations, who experience their own weaknesses and limitations, especially those affected by illnesses or disabilities that severely restrict their personal independence and freedom. Care given to them is a hymn to human dignity, a song of hope that calls for the choral participation of society as a whole.

Melanie peut le faire

Occasionally one comes across an absolutely lovely story: Melanie peut le faire. I think it's a story Jerome Lejeune will have enjoyed from his place in heaven.

And here, even on "take two", the children still managed to steal the show!

Nobel Prize for Medicine 2010 - further coverage

ZENIT are reporting a statement by the president of the Pontifical Academy for Life in response to the award of the Nobel Prize for Medicine to Dr Robert Edwards.

The president of the Pontifical Academy for Life is acknowledging that the winner of the Nobel Prize in medicine is a scientist to be recognized, but he says he would have voted for other candidates.

Bishop Ignacio Carrasco de Paula released a statement in response to Robert Edwards, the doctor who invented in vitro fertilization, winning today the 2010 Nobel for medicine.

The bishop observed that giving the Nobel to Edwards caused "a lot of support and not a little perplexity, as was to be expected."

"Personally," the prelate added, "I would have voted for other candidates, such as [Earnest] McCulloch and [James] Till, who discovered stem cells, or [Shinya] Yamanaka, who was the first to create an induced pluripotent cell (iPS)."

I note with interest the way in which the other candidates for whom Bishop de Paula would have voted are scientists whose work follows the approach I suggested at the end of my previous post on this subject, referring to the work of Professor Jerome Lejeune.

At the moment I can't find the full text of this statement, but I will link to it when I have found it.

Bridges and Tangents makes an interesting comment on the leader article in today's Times: The power of language in ethical argument.

Nobel Prize for Medicine 2010

Today has seen the announcement that the 2010 Nobel Prize for Medicine has been awarded to Dr Robert Edwards, in recognition of his work in developing IVF techniques for the treatment of human infertility. This prompts a number of reflections that arise from the implications of this award in terms of the ethics and culture of the practice of medicine.

Firstly, one might take the point of view that this award can be seen as a recognition of the scientific work undertaken by Dr Edwards and his colleagues, and that it prescinds from any ethical judgement in favour of or against that work. This point of view would hold that one can separate a recognition of the scientific work from its ethical evaluation. I think there is some validity in this point of view, but only in so far as one might wish to respect the autonomy of the scientific enterprise with respect to the religious sphere, and therefore might wish to refrain from imposing onto the "secular" (in the best sense of that term) scientific world the ethical point of view of one particular religion. On the other hand, though, if by taking this point of view we mean that scientific activity is intrinsically neutral from a moral point of view, and that the evaluation of scientific activity has no ethical component; then I would not consider it valid. Perhaps the most famous discussion of this idea of moral neutrality in science - and rejection of it - is that of C P Snow.

The second thought follows from this first. IVF treatment is subject to different ethical evaluations, as is recognised at least implicitly, if not explicitly, in one sentence of the announcement of the award to Dr Edwards. It might, therefore, have been possible for the Nobel Committee, in making the award, to remain itself neutral with regard to the different ethical evaluations of IVF treatment and therefore of Dr Edwards work. This would not be to suggest that Dr Edwards' work has no ethical "content"; but it would be a reciprocal stance to that of not wishing to impose onto the scientific world the ethical point of view of one particular religion, a reciprocal stance that refrains from imposing onto the wider world of politics, ethics, religion and human culture a single ethical stance from within the scientific community.

I do believe that this kind of respect by science for a kind-of-autonomy of the wider culture represented a real possibility for the Nobel Committee. A careful reading of the press release of the announcement, and a careful listen to the video of the presentation of the award (it is in English!), will reveal no explicit ethical endorsement of IVF. One can, however, read in to the announcement an implicit ethical endorsement, and this arises from three aspects of the announcement. The first is the unqualified description of Dr Edwards contribution as being a "milestone in the development of modern medicine"; the second is the recognition in the announcement that IVF is now an "established therapy throughout the world"; and the third is the way in which the announcement refers to the "joy" that IVF has brought to couples who would otherwise have been childless. The following comment, from the BBC news report carries this implicit ethical endorsement further:

Professor Basil Tarlatzis, past-president of the International Federation of Fertility Societies, said: "This is a well deserved honour.

"IVF has opened new avenues of hope for millions of couples throughout the world.

"Edwards and Steptoe were real pioneers, and the award of the Nobel Prize honours not just their work, but the whole field of reproductive science...

One might do well to notice the implicit nature of the ethical endorsement of IVF expressed in this award; and to notice that it is implicit and not explicit. One could make a case that the award of the Nobel Prize does not, in itself, represent an ethical endorsement of IVF but, more than anything else, is a recognition of a widespread use of IVF in medicine. Whilst that implies an ethical endorsement, that is all that it does; and one can challenge the implication without denying the legitimacy of the Prize.

The Nobel Prize announcement does suggest a very positive view of the experience of IVF treatment by couples who undergo that treatment. Others will have better experience than I have to comment on the experience of repeat IVF cycles, which may constitute a less positive experience.

I think it was about the year 1972 that a French physician committed himself to working in defence of pre-born children, particularly those suffering from trisomy. This followed a television programme in his country that first suggested that those diagnosed within the womb as suffering from a disability might be aborted. That eminent physician's daughter relates how Professor Jerome Lejeune had already spoken at the United Nations in defence of the life of the unborn child. And the evening that he had done that, writing to his wife, he noted:

This afternoon I lost my Nobel Prize

Professor Lejeune discovered the particular genetic abnormality that gives rise to Down's Syndrome. It was the first ever identification of a connection between one particular genetic fault and the illness or disability that it caused. It is the discovery that lies at the beginning of the search for genetic treatments for illnesses, a search that is now expressed in different forms of stem cell research, some that Professor Lejeune would not have considered ethically just and others that he would have supported.

I wonder if, when that research comes to its fruition, and medical treatment undergoes the revolutionary change to genetically based treatments; I wonder if at that point the work of Professor Lejeune will be considered worthy of a Nobel Prize, in the same way that Dr Edwards has been awarded his prize as the results of his work have become an everyday experience in the medical world? Nobel Prizes are not awarded posthumously, so no prize could actually be awarded; but it would be nice to think that Professor Lejeune's contribution to the field were recognised in some way. It would represent a genuine "secularity" of the world of science in respect to a particular ethic of science itself.

Jerome Lejeune and a success for gene therapy

The news media have today reported a successful treatment (as part of a clincial trial) of an inherited eye disease using a technique of gene therapy. This is part of the report on the BBC news website:

An 18-year-old whose sight was failing has had his vision improved in a pioneering operation carried out by doctors at Moorfields Eye Hospital. The London researchers used gene therapy to regenerate the dying cells in Steven Howarth's right eye. As a result he can now confidently walk alone in darkened rooms and streets for the first time.

Steven, from Bolton, is the third person to have the operation - doctors expect better results in future cases. Before the procedure, he could hardly see at all at night and in time he would have lost his sight completely.

His condition - Leber's congenital amaurosis - was due to a faulty gene that meant that the light-detecting cells at the back of his eye were damaged and slowly degenerating further.

But, in a delicate operation, surgeons at Moorfields injected working copies of the gene into the back of Steven's eye.

As I listened to this news on the radio, I was reminded of the person who first identified a link between a specific genetic defect and a resulting illness. The illness concerned was Down's Syndrome, and the geneticist Jerome Lejeune. It was the aim of Jerome Lejeune's research that the discovery of this link would lead to the development of a cure. A similar intention lay behind the work of Professor Liley, originally from New Zealand, who first invented the technique of pre-natal diagnosis. Sadly, both men saw their discoveries diverted from their original objectives towards selective abortion of those identified in the womb as being disabled.

In some way at least, today's news represents a fulfilment of their work. The potential of gene therapies to revolutionise medicine is beginning to become a reality. And, at the very beginning of this development, lies the work of Jerome Lejeune.

My own direct memory of Jerome Lejeune is seeing him chairing a question and answer session at the end of a conference in Oxford, just a few months before he died in April 1994. This he did in a way that can only be described as "fatherly", and I had to remind myself of his immense moral and intellectual stature. Having since read "Life is a Blessing", the biography of Jerome Lejeune written by his daughter Clara, this was entirely in character.