Navigating impasses in Bioethics: End of Life, Disability and Mental illness

Navigating impasses in Bioethics: End of Life, Disability and Mental illness

By Caterina Milo

The UNESCO Chair in Bioethics and Human Rights is glad to have supported the publication of the Journal of Disability & Religion Special Issue (3) 2018 on ‘Navigating impasses in Bioethics: End of Life, Disability and Mental illness’.

Fr. Gonzalo Miranda

This special issue followed the interdisciplinary research workshop “Navigating Impasses in Bioethics: End of Life, Disability, and Mental Illness,” (freely available online until May 31, 2019) held on December 8, 2017, at the Von Hügel Institute for Critical Catholic Inquiry (VHI) at St Edmund’s College, University of Cambridge, that was attended also by our director Alberto Garcia and Fr. Gonzalo Miranda, dean of the Faculty of Bioethics at Pontifical Ateneum Regina Apostolorum in Rome.

Alberto Garcia

The core topic analyzed through the articles is euthanasia. This is both a timely and highly debated topic in Europe and worldwide, as it is shown by the ongoing judicial and parliamentary debate concerning Assisted suicide in UK, the 2018-judgement of the Italian Constitutional Court and the push towards a regulation on assisted suicide in Italy, and the 2017-legalization of Assisted dying in Canada.

The articles included in this issue provide a multifaceted exploration of this topic, merging both legal and ethical reflections. They ultimately address how the legalization of euthanasia is influenced by ethical concepts like quality of life, dignity, autonomy, agency, consent and what practical consequences this brings forth.

The first two articles, edited by Schiltz and Campos, focuses on the practical implications of the legalization of physician-assisted suicide in the USA and Canada. Schiltz claims that the legalization of physician assisted suicide for people with disabilities amounts to a form of discrimination. More fundamentally this regulation is in stark contrast with the American disability Act in so far as it sends a clear discriminatory message towards disabled people. ‘The statement that is made by such laws is that life with a disability is not worth living; by extension, persons living with disabilities are not worthy of life’ (Schiltz, 242-243). Thana de Campos, focuses on the Canadian legislation exploring the implication of the inclusion of mental health patients. She challenges the mainstream understanding of human dignity portrayed by this legislation, claiming that it rests on a mere-homo economicus view, that is to say one that focuses on a pure quality of life understanding. She claims instead that a personalist view of dignity should be purported and hence the intrinsic value of every human being supported.

The second group of articles further enriches the reflection providing personal stories concerning disability. McKearny, asks the burning question of ‘how much power should someone have over the life of the most vulnerable?’ This question arises from his personal experience at L’ Arche, a religious community that offers support to people with cognitive disabilities. His reflections rests on a critique of autonomy, care and responsibility that have informed the idea of agency and the euthanasia debate. Fistein, discusses the results of the Future Care study, an empirical research run by the Department of Primary Care and Public Health of the University of Cambridge. When it comes to patients with progressive neurological diseases, whose cognitive and physical functions are often strongly impaired, Fistein claims that it is key that the care-planning ponders not only norms of effectiveness and quality of life, but also moral principles of life-preservation. This is surely not a straightforward task: advantages and disadvantages should properly evaluated in the light of the patients’ right to treatment and their quality of life. David Jones, reflects on the tie between assisted dying and suicide. Through a reflection on two examples of suicide by disabled people, one unassisted and one assisted, it highlights that there are some points of dissimilarity, but also some of similarity. The aim of his reflection is to stress the danger of suicide, whether assisted or unassisted, for those who would be eligible for euthanasia in the low countries or assisted suicide in Switzerland.

The third group of articles expands the reflection provided through philosophical and theological accounts of life and death for people with disabilities. Ripamonti, reflects on the concept of autonomy in dying as the concept generally behind the euthanasia regulation. She claims this concept to be flawed because it excludes all those who live in a condition of dependency. To be un-autonomous ultimately does not mean to loose one’s own personal dignity. The lack of control over one’s life circumstances does not imply the lack of value or life’s ultimate meaning. Brock, reflects on the role of economic rationality in shaping the idea that some lives are not worth living, like those of people with disabilities. The life of a disabled is in a condition of ‘debt’ something that is rejected by nowadays western societies. This perception is also in stark contrast with early Christian ideas of human solidarity: it is an ethics of mutual support that we should expect, rather than the legalization of euthanasia. The final article, edited by Elliot, provides a theological account. He challenges the anthropological idea of ‘despair’ and proposes the theological hope as a way forward. In this view disabled patients are themselves made at the image of God: they are the living image of Christ, bearing his sufferings but also, in hope, His resurrection.

This special issue provides a unique account of one of the most debated topic: euthanasia. Its uniqueness stands on the variety of contributors, from legal, to theological, philosophical, medical, on the topic of euthanasia. It indeed includes a wide range of  timely and thought-provoking articles that will shape the broad academic and non-academic debate concerning end-of life issues, especially euthanasia and disability.

Evangelizing culture through sport and interreligious dialogue: the example of the Vatican cricket team

Evangelizing culture through sport and interreligious dialogue: the example of the Vatican cricket team

by P. Sameer Advani – Jose Mathew

The Vatican’s cricket team, founded in 2014, is made up of priests and seminarians who study and work in Rome and is affiliated with the Pontifical Council for Culture and Sport of the Vatican under Cardinal Gianfranco Ravasi. Team members come from India, Sri Lanka, Pakistan, Canada, Australia and Ireland. Fr. Eamonn O’Higgins, LC and P. Sameer Advani, LC, both professors of philosophy at the Pontifical Athenaeum Regina Apostolorum, are the managers of the team, and several of his players study in Regina Apostolorum and are formed in the Pontifical College Maria Mater Ecclesiae. The team has various objectives: to promote interreligious, ecumenical and intercultural dialogue, to increase awareness of the importance of religion for society, to address important social issues such as slavery and immigration, and to promote the spread of the Christian Gospel through cricket. Cricket matches therefore serve as platforms for bringing together different religious, social, and cultural communities and promoting what Pope Francis has called the “culture of dialogue”. The team then tries to engage and challenge leaders in the areas of religion, sports, media, and culture to work together for the common good. “We created the team because, although football is very popular in the traditionally Christian countries of Europe and South America, nothing could be compared to the popularity of cricket in Southeast Asia, which is predominantly Hindu and Muslim,” says P. Sameer. “Our idea is to use a language that we have in common with these groups and religions – the language of cricket – to start a dialogue with them.”

Most of our cultural tensions come because we don’t know each other. Ignorance is the source of almost all fundamentalisms, and cricket is a simple way to begin the process of true dialogue and friendship that lays the human foundations necessary for evangelization. No less important for Fr. Eamonn is the example of the Catholic priesthood and of the Catholic Church that is transmitted in this way. “We have so many stories in today’s press on the sins and failures of priests,” he says, “but to see 15 young seminarians, happy, who love their vocation and eager to serve the church, give much hope for the future and transmit a positive image that touches the hearts of many people.” Finally, concludes P. Sameer, “the dialogue between public reason and the rich heritage and accumulated wisdom of religious traditions is the key to building a society that truly respects man and seeks his good, and in a small way but importantly, we want to contribute to this essential task.” As a means to achieve these goals, the team played several high-profile games in its brief history, engaging in five“Light of Faith Tours.”In 2014, 2016, and 2018 they toured England playing matches against Anglican, Muslim, Jewish and Hindu-Sikh teams in some of the country’s most iconic locations: Lords in London, Headingly in York, Edgbaston in Birmingham, and Kent Spitfire Ground. The team also played against His Majesty Queen Elizabeth’s The Royal Household Cricket Club at Windsor Castle twice, and in 2018 they launched the Commonwealth Cup and Peace at the Crease initiative with Baroness Patricia Scotland, the Secretary General for the Commonwealth.

In 2017, the team traveled to Portugal and played against Muslim, Hindu, and Jewish teams in preparation for Pope Francis’ trip to the country for the 100th anniversary of the Fatima apparitions, and in 2018 they visited Buenos Aires, Argentina. Furthermore, they have played games against the Cricket Without Borders program that wants to help young people in poor neighborhoods through cricket. “Pope Benedict has often said that the essence of Christianity is a personal encounter with God,” concludes Fr. Sameer. “Through cricket, and in a simple but real way, I think we have helped many people, Christians and non-Christians, to meet again, in a deeper way, with God. The transformation and evangelization of culture are achieved in this way­– when people have been touched by God– and it’s incredible to see and participate in a project like a Vatican cricket team that God has and continues to use to get closer to us.”

“Man-machine interaction: the application in the disability’s field”  Masterclass in Robo-ethics, 4th lesson  Interdisciplinary Resarch Group on Neurobioethics, 25 January 2019

“Man-machine interaction: the application in the disability’s field” Masterclass in Robo-ethics, 4th lesson Interdisciplinary Resarch Group on Neurobioethics, 25 January 2019

By Giulia Bovassi

Encouraged by the words that the Holy Father, in Humana Communitas, dedicated in memory of the twenty-fifth anniversary of the Pontifical Academy for Life, also accompanied by the operative reality of Dr. Federica Ebau, we are called again in this research session to ask ourselves how to conserve humanity within the context of technical innovation.

Last January 25th, the Interdisciplinary Research Group on Neurobioethics, in cooperation with the UNESCO Chair in Bioethics and Human Rights and the Science and Faith Institute, hosted Federica Ebau, Product Specialist of Progettiamo Autonomia Robotics SRL, in order to reflect on the role of robotics in rehabilitation, a speech – as suggested by Claudio Bonito during his introduction – which could be synthetically defined as a conversation about the responsible use of robotic development. Precisely inasmuch as it is a graft between flesh and artifice, an external habit, robotics cannot disregard proper ethical investigations around the approximation between thinking reality and mechanized reality. An ambivalent combination of euphoria and fear, both settled over the uncomfortable session of the techno-scientific paradox.

Using exactly the term “paradox”, Pope Francis, in the letter mentioned above, presses on the anguish experienced by peoples in the era of scientific excellence. History, indeed the very birth of bioethics, marks the continual warning to tirelessly illuminate the action of the human being, therefore moral action, so that it can act as an indispensable glue between specialized studies and the true good for the “mankind’s care,” where the fundamental rights of every member of the human species, the dignity recognized to them and the responsibility towards the common good are contained. Transversely the commitment of international organizations such as the UNESCO Chair in Bioethics and Human Rights, which has the specific purpose of effectively feeding the solidity of common roots, in order to realize what the Holy Father has also recalled: a “global bioethics”.

Clinical practices, such as the professional experience presented by Ebau, concretize the proposed theorization. Robotics – the preferential research field of the speaker – is not only decisive for national and international territories, but rather a real investment material of the contemporary era, and there are three areas in which robotics will be massively involved: the military one, the hospital one and the industrial one. In the rehabilitation context, the patient – generally a paraplegic person – experiences a complex clinical process compared to able-bodied people, but also because these patients lead a life that is mostly active, domestic, athletic or lively working with an enormous therapeutic and rehabilitative need to combat sedentariness. The previous testimony of Carmine had already made us realize the importance of enormous accomplishments produced by self-esteem, willpower and fighting spirit; in the same way Ebau confirms the positive change in her patients and the centrality, in comparison with the machine, of adopting the existential perspective. “A boy in a wheelchair, with no sensitivity from the chest down, feels nothing. His perception of space is very different from ours; he feels like a tightrope walker hanging in the middle of nowhere”: for this reason the impact with the exoskeleton and therefore the adventure towards a change of dimension, from the bottom to the top, is a delicate point in the relational experience and, in this sense, has been interesting to hear the technique put in place by the doctor, proposing to the patient his own image through a mirror, a method of joining two images of the same person.

Once again we are witnesses that the real conflict between artifice and human being refers to personal identity, to the question about the self.

“Robo-ethics: robotics, rehabilitation, personalization and re-education of body and mind” Masterclass in Robo-ethics, 3rd lesson  Interdisciplinary Research Group on Neurobioethics, 14 December 2018

“Robo-ethics: robotics, rehabilitation, personalization and re-education of body and mind” Masterclass in Robo-ethics, 3rd lesson Interdisciplinary Research Group on Neurobioethics, 14 December 2018

By Giulia Bovassi

Addressing the issue of robotics is now a need that cannot be postponed, particularly in recent times, since a rapid acceleration forced this close face-to-face between robotics and human reality. The technical examination offered by the experts conceptually prepares for the personal testimony of Carmine Consalvi.

This third afternoon, dedicated to the interaction between different forms of specialized knowledge, brought the theory into praxis, not only through the interventions of Giovanni Morone and his colleague, Marco Iosa, but also through the autobiographical note of the young Carmine Consalvi, 31 years, whose history is linked to the exoskeleton application in rehabilitation. As a patient, Carmine brought an important fact back to the heart of the research so far conducted, easily to get lost when you enter conceptually into the bioethical issues, namely the human being. Claudio Bonito, member of the GdN and coordinator of the research subgroup on “Posthumanism”, introducing this last intervention as the conclusion of the afternoon session, contrasted the “to do” with the “to act”: the action framework is working on new moving realities. That Vitruvian man, from whom humanism took inspiration for years, is challenged by the external act, a product of man, the artifice of the creative mind, which runs the risk of reductively exhausting himself in himself, concealing the ultimate destination of a “to do” that makes itself “to act.” Empathy takes over. Carmine shared the following: the invention rushed in my aid by physically, psychologically and humanly giving me new forces, driven by the determination arose in succeeding ex novo to relate myself with someone looking into his eyes, which, backward, the view of the wheelchair, from the bottom towards the other, failed. Six years ago, the road accident: a trauma that drastically influenced his life and his habits causing him the lack of voluntary residual movements, removing the complete control of the trunk; aspects to which Carmine felt called in a physical and existential rehabilitative response. After learning about the exoskeleton, he decided to try it, firstly to test whether innovation was ready for him. The patient’s feedback lies on the adaptability of the robot to its psychological, as well as physical, predisposition. The device is applied when you let it; in this sense, Carmine spoke of a subjective, non-standardized reaction to this type of technology, where a non-marginal role in his case was played by constancy and willpower.

A closure which is in line with the opening of the seminar conducted by Morone, “The right robot for the right person at the right time: state of the art, future perspectives on the use of robots in neuro-rehabilitation,” which accompanied the reflection through the work done at the IRCCS Santa Lucia, where they deal with new technologies used in neuro-rehabilitation. Complex applications under multiple points of view, from the costs to the much longer rehabilitation times, up to the same effectiveness; factors assumed by a part of experts and researchers with extreme skepticism and, by the other part, with excessive optimism, two ways which made the relationship between therapy and technology not always linear – as explained by the professor. Then the fundamental question reiterated by. Morone, pervasive in all the neuro-rehabilitative practice, is: “in the moment when we have to push the neuro-plastic capacity to its maximum for recovery, functionality and ability, during the hospitalization (especially in patients suffering from stroke), did it provide a sufficient stimulus for the patients to their recover?” Here then returns the example embodied by Carmine himself, although with different clinical situations: to know which patients can benefit from therapeutic robotics, so from a generic question “is this robot generally effective?” to “for whom this robot is effective?” We need to change the question because the focus has changed. Within their research group, a team of specialists during about ten years of observation, noted how the resistance was massively sedimented in people psychologically proven by states of anxiety or stress, emotionally disturbed by the robotic element. By looking for a propulsive force in brain plasticity we learn first that there cannot be “any patient” for “any robot,” so that the neuro-rehabilitation principles can be facilitated or increased thanks to the robotic supplement.

Marco Iosa spoke on “The ethics of rehabilitation robots. The three laws of neuro-robotics”, with clear reference to I. Asimov, as the Three Laws of Robotics and to its explanatory filmography, such as “I, Robot.” Robots are designed for three types of work: the dirty one, the boring one and the dangerous one. In the case of rehabilitation or, generically, in medicine, there is a need for adaptability with what the patient wants to do or feels he can do, following a procedure that is very different from what is normally followed by pharmacovigilance. Thus, we could outline three modern laws of robotics in the health field: 

1) a robot for neuro-rehabilitation may not injure a patient or allow a patient to come to harm;

2) a robot must obey the orders given it by the therapists, provided that such orders do not contravene the First Law;

3) a robot must adapt its functioning to the patient’s abilities in a transparent way as long as this does not conflict with the First or Second Laws.

This structure is affected by the difficulty of the “Paradox of efficacy”, i.e. how to benefit from a proven effectiveness-risk criterion. The resolution is obtained changing the request, that is asking for whom it is effective (as already said, the anxious subject, if called to choose between robot and physiotherapist, opts for the latter). The professor noted, “the robot is like the invention of the machine; it answers the question: “what can you not do for the patient?” We thus tread on the limit not only between effectiveness and risk, but between therapeutic and enhancement, highlighted by the performance accomplished with cerebral, electrical or magnetic stimulation. What purpose and what distinction is made between what is therapeutically beneficial and what an enhancement? What is the distinction between treatments to provide for learning or athletic difficulties, emotional or traumatic management in the military field, etc.? Countless examples for a single ethical macro-question: is all that is technically possible also morally licit?

Presentation of the XXI edition 2019 of the Carta Artistica Universale (Universal Artistic Paper) – Marianna Foundation

Presentation of the XXI edition 2019 of the Carta Artistica Universale (Universal Artistic Paper) – Marianna Foundation

On February 19th, UNESCO Chair Director, Prof. Alberto Garcia, as a member of Honorary Committee of the Marianna Foundation, participated in the presentation of the XXI edition 2019 of the Carta Artistica Universale (Universal Artistic Paper).

What Marianna Foundation is?

Pinuccia Pitti

Pinuccia Pitti, the founder, is a painter and poetess who is aware of the painful humanity and of the sacredness and beauty of every human being,. She felt the duty to create the Marianna Foundation to disseminate and promote respect for the fundamental rights of women and of man, using the Universal Declaration of Human Rights (1948) as a reference point. Cultura dell’ amore dall’Europa a Tutti i Popoli della Terra: (Culture of Love from Europe to All the People of the Earth), which  is the central program of the foundation. From this project comes “The Universal Artistic Paper”, an editorial tool that brings Human Rights to the attention of the world. Published each year, every edition deals with a different topic. To disseminate the idea of Human Rights, the “Carta Artistica Universale” uses a pictorial work, a poem by Pinuccia Pitti and a commentary by an authoritative personality, this year, Stefania Giannini, Assistant Director – General for Education, UNESCO, related to the topic of the year and is officially presented during a prestigious evening with important speakers. In the same context, the Foundation gives out different awards which include: The “Intercultura” prize awarded to two students of different nationalities for a paper on the theme of the year; The “A Life for Love” award to a person who has distinguished himself for dedication and humanity.

the XXI edition 2019 of the Carta Artistica Universale (Universal Artistic Paper)

Stefania Giannini, Assistant Director – General for Education, UNESCO, wrote the main massage of the Carta Artistica Universale emphasizing the importance of the UNESCO role in promoting “values of solidarity, social justice, global citizenship and environmental awareness” through art education. Moreover, she added that “advancing these values through the arts is a powerful way to build more inclusive and just societies and to strengthen peace.”

UNESCO Chair in Bioethics and Human Rights is committed to raise awareness of human rights through Global Art and the International Research Group & International Network of Bioethics and Aesthetics that is part of the Bioethics Art Group of Study. Through this project, the chair wants to study the relation and interaction between bioethics, art, and the impact of art in human behavior; evaluate the impact of the transformative power of arts in research and medical ethics as well as in environmental ethics; and to bridge the gap between academics involved working in bioethics and the art world by carrying research activities and publications.

Roboethics: Humans, Machines and Health – Pontifical Academy for Life

Roboethics: Humans, Machines and Health – Pontifical Academy for Life

On February 25th and 26th, the Pontifical Academy for Life organized a workshop on Roboethics: Humans, Machines and Health. The goal of the Workshop was to provide updates on the characteristics of the technologies in the field of robotics. One of the primary goals was to shape and identify the questions rising in the field from the anthropological and ethical point of view through those who work on the ground. Another goal was to propose some ethical criteria and possibly some recommendations in order to reintroduce a global dimension of the theme.

At the workshop, UNESCO Chair Director, Prof. Alberto Garcia had the chance to meet Pope Francis. In their meeting, he presented the Chair and spoke about the that the Chair has carried out through these years in disseminating principles of Human Rights and Bioethics. Through a constantly working towards organizing workshops, national and international conferences, UNESCO Chair in Bioethics and Human Rights is committed to continuing the establishment of forums of discussion on Multiculturalism and Interreligious dialogue, Neurobioethics, and Human Rights.