PatentsInHumans Public Launch Event: An Overview 

Social Lives 

Authors: Professor Aisling McMahon, Principal Investigator (PI) & Sinéad Masterson, Project Manager, PatentsInHumans

Professor Aisling McMahon presenting to attendees
Professor Aisling McMahon

On 20th April 2023, the PatentsInHumans team were delighted to host the public launch event for the European Research Council (ERC) funded PatentsInHumans project in Maynooth University. The event was attended by over 45 individuals, including, members of the public, students and academics working in a range of disciplines (including law, biology, political science and business), practising lawyers, and technology transfer specialists. 

The PatentsInHumans project, based in the School of Law and Criminology and ALL Institute at Maynooth University, commenced on the 1st November 2022 and is a large interdisciplinary five-year project. It is funded by a European Research Council (ERC) Starting Grant and led by Professor Aisling McMahon. Alongside Professor McMahon, the PatentsInHumans team includes project manager, Sinéad Masterson, and postdoctoral researcher, Dr Opeyemi Kolawole. As the project develops, we will be recruiting more researchers to join the team in the coming months and years ahead. 

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From the Centre Back to the Margins: Invisibility of Persons with Disabilities in the Draft Convention on the Right to Development

Social Structures

Author: Harry Chikasamba, PhD Researcher, Assistive Living and Learning (ALL) Institute, School of Law and Criminology, Maynooth University

Harry Chikasamba profile picture
Harry Chikasamba

Until 2006, persons with disabilities were invisible in core legally binding human rights instruments, including the International Covenant on Civil and Political Rights (ICCPR) and the International Covenant on Economic, Social and Cultural Rights (ICESCR). Unsurprisingly, this was the case because persons with disabilities were being considered as having a lower social status, being dependent and inferior in society. In the early and mid-2000s, persons with disabilities convened as self-advocates in the historical halls of the United Nations (UN) in New York where they exhibited an unwavering spirit of resilience and genuine pursuit of equality which shaped and brought to life the first ever legally binding international human rights treaty in the 21st century: the Convention on the Rights of Persons with Disabilities (CRPD). In principle, the CRPD protects and promotes the rights and dignity of persons with disabilities, ensuring their full and equal participation in society.

Sadly, the draft Convention on the Right to Development, currently undergoing negotiations at the UN, risks undermining the feeble progress painstakingly made over the past 15 years since the CRPD came into force in 2008. Among other gains, the CRPD has served as the major global catalyst towards viewing persons with disabilities as equal members of society, positioning disability as both a matter of human rights and of development which is evident in the inclusion of disability issues in the 2030 Agenda for Sustainable Development. Worth noting, disability and persons with disabilities are referred to 11 times in the 17 Sustainable Development Goals (SDGs) that make up the 2030 Agenda. Dishearteningly, the invisibility of persons with disabilities in the draft Convention means that, at this juncture, any prospects of advancing disability-inclusive development remain bleak and devoid of hope.

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An Interview with Stephanie Ortoleva, Founder of Women Enabled International (November 14th, 2022)

Stories/Lived Experience

Symposium

Author: Dr Ana María Sánchez Rodríguez, MSCA Fellow and Adjunct Assistant Professor of the Assisting Living and Learning (ALL) Institute

Stephanie Ortoleva and Ana Maria Sanchez Rodriguez
Stephanie Ortoleva and Ana María Sánchez Rodríguez

Stephanie Ortoleva, founder of Women Enabled International (WEI) advocates for women and girls with disabilities. She says that, “disabled women are organizing for ourselves because we have found that other movements, whether it’s the women’s rights movement or the disability rights movement, very often don’t include our issues as the key points of their advocacy. Disabled women just aren’t going to be silent anymore” (Ford Foundation, 2020).

In the summer of 2012, I started my research journey as an intern for WEI. WEI wanted to help and join the work on the revision of laws in India and globally. The central issue was violence against women and girls with disabilities. The same year, Stephanie and Hope Lewis published a seminal work on violence against women with disabilities called: Forgotten Sisters – A Report on Violence Against Women with Disabilities: An Overview of its Nature, Scope, Causes and Consequences.

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Developing a Sustainable, Needs-based Roadmap for Social and Assistive Robots for Older Care

Social Technologies

Symposium

Authors: Louise Veling is a Senior Post-Doctoral Researcher with the Horizon 2020 SHAPES Project as part of the Assisted Living and Learning (ALL) Institute / Department of Engineering at Maynooth University. Rudi Villing is a Lecturer with the School of Engineering at Maynooth University, Programme Director of the BSc in Robotics & Intelligence Devices, member of the Hamilton Institute and associate director of the Assisted Living and Learning (ALL) institute.

Left to Right Rudi Villing, Louise Veling
Rudi Villing and Louise Veling

Few people would dispute the importance of centring older people’s needs when it comes to developing assistive technologies. For assistive robots, this is even more important. As in other fields, within robotics and human-robot interaction (HRI) research, older people are often subject to stereotypical representations and ageist attitudes. Assistive robots are also still in their infancy, with few yet deployed in practice, so there is still some distance to go before robots make it out of the lab and into the real world. What they will be capable of and how they will be used is still in a process of negotiation.

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Is Social Sustainability the Forgotten Pillar of Sustainable Development?

Social Structures

Symposium

Author: Ruth O’Reilly, Senior Built Environment Design Advisor, Centre for Excellence in Universal Design, National Disability Authority

Here at the Centre for Excellence in Universal Design, we often use this quotation from the designer, Victor Papanek, to explain the focus of our work:

The only important thing about design is how it relates to people

Quotation 'The only important thing about design is how it relates to people' alongside an image of a book with the title Design for the Real Workld, by Victor Papanek.
Figure 1: Quotation from Design for the Real World by Victor Papenek (1971)

A key tenet of Universal Design is that good design works well for everyone. Sometimes however, it seems that social sustainability is the forgotten pillar of sustainable development. How can we persuade designers that taking a Universal Design approach – designing for all people, regardless of their age, size, ability or disability – is a key element of sustainable development?

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The All Institute through a Sustainable Lens: Celebrating the Ideas in ALL blog’s Second Anniversary

Symposium

left to right Hannah Casey, Lea Urzel Francil and Matthew McKenna
Hannah Casey, Léa Urzel Francil and Matthew McKenna

The ALL Institute celebrated its fifth anniversary at the end of November, which also coincided with the second anniversary of its blog – Ideas in ALL–. With this in mind, we, the blog’s editorial team, invited ALL members, as well as its collaborators and close stakeholders to engage with the topic of sustainability and contribute to a dedicated symposium.

Central to the work of ALL is the core ethos of a rights-based, person-centered approach to social inclusion and independent living. The theme of sustainability aligns itself closely with this underpinning vision. As such, the work of ALL comprises a vital nexus between academic research, civil society, lived experience, law and policy. Sustainability represents a core principle of the ALL Institute, and hence of the Ideas in ALL Blog.

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Sustainability: What it means and how to practice it.

Social Structures

Symposium

Click for the Audio Version

Author: Cassandra Murphy, PhD researcher in the Psychology Department of Maynooth University, funded by H2020 project GoGreenRoutes, Assisting Living and Learning Institute (ALL)

Cassandra Murphy Profile Picture
Cassandra Murphy

I often talk about sustainability in my work being in the realm of environmental psychology. My research explores the human-nature relationship, which inevitably links to pro-environmental behaviour. People often assume pro-environmental behaviour defines sustainability, but sustainability is much more than recycling and planting trees. Through my conversations I have learnt that the term ‘sustainability’ can be perceived differently. We constantly hear about sustainability, in the news, in our emails, in daily conversations; but what does this term really mean? Everyone’s understanding is individual to their lives and their experience. For some they instantly think of the UN Sustainable Development Goals whereas for others it can simply mean having the ability to keep up momentum of what they do each day and not burn themselves out. An all too familiar experience of many after the recent pandemic.

UN Sustainable Development Goals Logo
UN Sustainable Development Goals logo.

The most common definition of sustainability comes from the UN World Commission on Environment and Development which says sustainable development means “to ensure that it meets the needs of the present without compromising the ability of future generations to meet their own needs.” That’s exactly what it is. Ensuring that throughout our lifetimes we strive to create a world in which we do not take from the generations that come after us, but instead make sure they have what we have, if not better. The future generations should have equal access to the resources we have and be able to benefit from them no matter where they are, or how much money they earn. In a sense, this is the idea that we are leaving no one behind.

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Our Journey to the End of the Night… and towards a new future. Happy Birthday Ideas in ALL!

Symposium

Picture of the three ALL Institute Co-Directors in front of a white back drop. From left to right: Deirdre Desmond, Mac MacLachlan, Delia Ferri
Delia Ferri, Mac MacLachlan, Deirdre Desmond

Ideas in ALL is two years old! Our blog was set up on 3 December 2020, amidst the Covid-19 pandemic. The blog seeks to engage an audience beyond academic journal readers – it aims to be relevant to a much wider range of stakeholders and to engage with public debate.  A crucial element of the Assisting Living and Learning (ALL) Institute’s blog – Ideas in ALL is to empower and give voice to people with disabilities, mental health problems, or chronic illnesses and older people, and their many and varied experiences of positive ageing. We also want those often marginalized from the benefits of mainstream society to feel that they can share ideas here. We strive to ensure that Ideas in ALL is characterized by accessible style, pluralism, openness and appreciation of difference.

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PatentsInHumans ERC Project Commences: PatentsInHumans Explores the Bioethical Implications of Patents on Technologies Related to the Human Body

Social Structures

Author: Professor Aisling McMahon, Principal Investigator (PI), PatentsInHumans

Aisling McMahon profile picture
Aisling McMahon

On the 1st November 2022, the PatentsInHumans project based in the School of Law and Criminology and ALL Institute at Maynooth University commenced. PatentsInHumans is large interdisciplinary five-year project funded by a European Research Council (ERC) Starting Grant. This project was one of 8 projects awarded to PIs based in Irish institutions,  under the ERC Starting grant scheme in 2021.  

This ERC funding will be used to build an interdisciplinary project team and will enable us to explore the core project research questions and aims, which span bioethics, science policy, law, and innovation. This team includes our project manager, Sinéad Masterson, and postdoctoral researcher, Opeyemi Kolawole, both of whom recently joined the team, and who will be joined in future by further postdoctoral and PhD researchers. Together, we will work to tackle the central project research question, which focuses on investigating what are the main bioethical implications posed by patents over ‘technologies’ related to the human body, and how are these bioethical issues accounted for, if at all, within European patent decision-making.

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