Ideas in ALL

Intellectual Property Injunctions over Health-Related Technologies: Balancing Patient Interests and Intellectual Property Rights

Research Stream: Social Structures

Author: Sharon Adedapo Research Assistant, PatentsInHumans Project, ALL Institute and Department of Law and Criminology

There are a range of different types of intellectual property rights (IPR), including patents which offer protection over inventions, copyright protection which can be used to offer protection to literary or artistic works, and trademarks which can be used to protect for example, certain commercial symbols, images associated with a product etc. There are also various justifications for different types of IPRs, however, in the case of patent rights a key rationale often relates to how such rights can offer an incentive to inventors to develop new inventions by enabling such inventors to gain recognition or financial benefits from their work. For instance, patents enable rightsholders to develop a financial return from a patented technology because patents are exclusive rights (granted for a minimum of 20 years). When granted a patent means the rightsholder can control various aspects such as the use, production, and sale of their inventions for commercial purposes. If others wish to use that patented technology for commercial purposes, they must seek permission or a license from the rightsholder, which is typically granted in return for payment or other exchange.

Pharmaceutical worker in gown, mask and gloves, preparing a large silver machine for work in pharmaceutical factory. Image credit: iStock — Image credit: iStock

Patents and Health

Patents are often seen as particularly significant in the context of health technologies, and within the pharmaceutical sector. This is largely due to the fact that the research and development process for new health-technologies can take several years, and is a costly process that requires significant investment. Therefore, it is sometimes argued including by industry that patents and other IPRs are a key incentive for such investment. Having said this, patents and other IPRs can also have a considerable impact on access to health-technologies , including medicines, vaccines, and tests. Accordingly, while patents have an important role in the healthcare sector, a careful balance is needed in relation to considering their potential incentivising role alongside their potential impact on access to health-technologies.

Injunctions as a Remedy to Patent Infringement

Where rightsholders of the patent perceived there has been an infringement of their patent right, they may seek to enforce these rights against the infringer. One legal tool for enforcing a patent is to seek an injunction which is an equitable remedy that is issued at the court’s discretion. There are various types of injunctions, but the two main types that will be discussed in this article are interlocutory/interim injunctions and perpetual/permanent injunctions. Interlocutory injunctions are granted at the early stages of a court case to maintain the situation until the full trial. Perpetual injunctions are granted at the conclusion of the legal proceedings and permanently prohibit a party from engaging in a specific action. In the patent context, for example, an injunction could be applied for seeking a legal order to prevent the alleged patent infringer from continuing to carry out the alleged infringing act. For example, if a company, A, is producing a medicine and that medicine is found to be an infringement of company B’s patented medicine, company B could seek an injunction to stop the production of the infringing product.

Balancing IPRs and Patient Interests: Tailored Injunctions & Patent Infringement

However, such scenarios give rise to difficult questions where the patented product is a health-technology. For example, imagine a situation where a medical device which is being used to improve patients’ condition is found by the court to be infringing another party’s IPRs and that other party seeks an injunction against the infringer to halt their use/production of that technology. Should the courts grant an injunction to immediately cease its use which could impact the availability of a suitable device for other patients/procedures? What happens if there are no alternative suitable devices available for patients in such cases? Such scenarios give rise to a range of potential legal issues, including tensions between upholding rightsholders IPRs and the implications this may have for patients or health-care systems.

In some cases, courts have sought to balance such interests, including by tailoring the injunctive relief grant. An injunction is tailored when the court modifies the court order to fit the particular circumstances of the case and the parties involved. It can be done, for example, by prohibiting or requiring certain actions, setting a time frame, or delaying the granting of the injunction. Such scenarios were recently considered by English courts in the cases of Edwards Lifesciences v Boston Scientific [2018], and Evalve v Edwards Lifescience [2020].

Recent English Cases – Tailored Injunctions, Patent Infringement and Health-Technologies

These two recent English cases on this topic provide an illustration of some of the issues at stake. First, in Edwards Lifesciences v Boston Scientific [2018], Boston Scientific applied for an injunction against Edwards Lifesciences to prevent the continued sale and use of Edwards’ Sapien 3 transcatheter heart valve. In deciding on whether to grant the injunction, the court considered the impact of granting this on patients who were using the Sapein device. Ultimately, while the court held that Edwards device infringed Bostons’ patent, they acknowledged that a certain group of patients relied on the Sapien 3, and thus tailored the injunction. The court issued a 12-month stay on the injunction to give clinicians time to retrain alternative devices that could be used (paragraphs 22-31). Additionally, the court allowed patients with no other appropriate alternative to continue using the Sapien 3 for as long practitioners determined were necessary until a suitable alternative was available (paras 52-54 and 68-71). This could be seen as a reflection of the court using the proportionality principle to weigh public interests involved and private interests in protection of IPRs.

More recently, the role of public interest in the issuance of injunctions was considered by the English courts in Evalve v Edwards Lifescience [2020]. In this case, Evalve was the owner of patents for the MitraClip device, which is used to treat mitral valve regurgitation, and the High Court held that Edwards’ PASCAL device infringed Evalves’ patent. Edwards argued that an injunction would harm patients who could only rely on their PASCAL device. The court acknowledged that, in certain rare circumstances, the public interest can justify the denial of an injunction, specifically if the infringing product is the only effective treatment available for certain patients (paras 73-91). In this case, the court held that the MitraClip was generally suitable and thus the injunction was granted. However, the court tailored the effect of a full injunction by creating an exception where it would not apply for specific cases when the PASCAL device was the sole device available for certain patients.

Conclusion

The enforcement of patent rights in the healthcare sector via private law remedies, including questions around the grant or refusal of injunctions, highlights tensions which can arise in certain contexts between balancing the need for protection of IPRs and also ensuring access to life-saving treatments. While patents are an important tool for fostering medical and pharmaceutical advancements, in certain contexts their strict enforcement can have unintended negative consequences for patients. The recent English court cases demonstrate that courts are increasingly recognising this tension, leading to more nuanced approaches which consider public interests on a case-by-case basis. A flexible approach to IP enforcement by tailoring injunctions, delaying enforcement, and allowing exceptions in cases of life-saving treatment can present a useful avenue for balancing IP rights with public health needs.

As part of the ERC PatentsInHumans project, together with Prof Aisling McMahon (PI), we are currently conducting research on injunctions as a remedy for IP infringement and the scope of courts to consider patient and other third-party interests in the health context, including how such issues are being addressed by the recently established unified patent court.

You can find out more about the PatentsInHumans project, including ongoing work at: https://patentsinhumans.eu/

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This research is funded by the European Union (ERC, PatentsInHumans, Project No. 101042147). Views and opinions expressed are however those of the author only and do not necessarily reflect those of the European Union or the European Research Council Executive Agency. Neither the European Union nor the granting authority can be held responsible for them.

30 years of the TRIPS Agreement: The Need to Balance Intellectual Property Rights with the Right to Health

Research Stream: Social Structures

Author: Lauren Kane, Research Assistant, PatentsInHumans Project, ALL Institute and Department of Law and Criminology

World Intellectual Property Day took place on the 26th of April 2025. On this day, many people celebrate the role of intellectual property rights (IPRs) such as patents, trademarks, industrial designs and copyright, in incentivising creativity and innovation. Indeed, IPRs have an important role in incentivising innovation, in certain contexts. For example, patents allow the rightsholders an exclusive right over the patented technology which they can use to develop new health technologies to generate an income stream from that technology. In this way, such rights are often seen as incentivising the development of new medicines. However, in this context, it is also important to reflect on the broader impacts of certain uses of IPRs on society, including their potential impact on access to technologies (such as medicines) in the healthcare context. Such issues are particularly timely in 2025, as this year marks the 30^th anniversary of the coming into force of the World Trade Organisation’s Agreement on Trade-Related Aspects of Intellectual Property Rights (TRIPS) Agreement, an international agreement which provides for uniform minimum standards in relation to the protection and enforcement of intellectual property rights.

Intellectual Property Rights in the Healthcare Context

Intellectual Property rights, including patents, can have a significant impact for access to health-technologies. For context, a patent is a type of intellectual property right which confers the rights-holder an exclusionary right to control key aspects, including the sale, supply, production of their patented technology for commercial purposes, generally for a period of twenty years.

In practice, for health-technologies, patents can provide rights-holders with legal avenues to prevent others from developing an equivalent (generic) version of a patented medicine during this period and therefore, rightsholders have significant power to control competition. This, in turn, can enable rightsholders to command high prices which in some cases can be greatly in excess of production costs. It is acknowledged that such prices are often justified as necessary to compensate for the investment costs of research and development (R&D) of developing new and more effective drugs. Nonetheless, in such contexts, such prices (and IPRs can be a key role in this) can potentially impede access to medicines, with implications for healthcare and the right to health.

https://www.ideasinall.com/wp-content/uploads/2025/05/iStock-alexandrumagurean.png

What is the Human Right to Health?

A human right to health was first proclaimed at the global level within the World Health Organisation (WHO) Constitution, which was adopted in 1946 and came into force in 1948. The right to health is now articulated in various international and regional instruments, and over 100 national constitutions worldwide.

A key provision in this context is Article 12 of the International Covenant on Economic, Social and Cultural Rights 1966 (ICESCR), which provides that:

“The States Parties to the present Covenant recognise the right of everyone to the enjoyment of the highest attainable standard of physical and mental health.”

States Parties that have ratified the Convention are required to respect, protect and fulfil the right to health, through progressive realisation, and within the limits of their individual resources. Additionally, the Committee of Economic, Social and Cultural Rights, the UN body responsible for monitoring the implementation of the ICESCR, has also confirmed under General Comment 14 (2000) that a key component of the right to health is that States must ensure accessibility of medicines, including economic accessibility. However, the right to health may be negatively impacted by patents, for example, if medicines (or other health technologies) necessary for health are marketed at a price which significantly impedes access, which can create conflict between the human rights and intellectual property regimes.

Conceptual image representing The state of health in Europe. Thermometer and medicines against Europe political map — Credit iStock and alexandrumagreen

The Impact of the TRIPS Agreement

Moreover, since the TRIPS Agreement came into force on the 1^st of January 1995, the tensions arising in the relationship between human rights and intellectual property rights have arguably been heightened, and these tensions have been the subject of significant discussion and debate. Prior to the establishment of the TRIPS Agreement, countries used a diverse range of approaches to intellectual property protection, including tailoring their individual level circumstances to meet the health needs of populations. For example, pre-TRIPS era, developing countries could acquire equivalent, generic medicines from countries that did not offer patent protection to pharmaceuticals at that time, such as India. Under the minimum standards set down by TRIPS, this is longer possible as all TRIPS Contracting States must ensure protection of IPRs over all fields of technology. Consequently, such States have limited discretion under TRIPS over IP protections, and for this and other reasons, LMICs may struggle to provide access to expensive patented medicines for those who require them.

Some examples of the impacts IPRs can have on access to health in the health emergency context are discussed in detail elsewhere and include the HIV/AIDS crisis during the 1990s/2000s, and more recently, the COVID-19 pandemic. Increasingly, such impacts are also evident in everyday healthcare contexts, particularly in relation to novel medicines which treat cancer and rare diseases. This means that high costs are increasingly posing access issues for LMICs and high-income countries (HICs). While it is important to acknowledge that IPRs are not the sole factor contributing to such costs, how such rights can be used arguably represent a key element contributing to this.

The TRIPS Agreement did provide for some exceptions or ‘flexibilities’ to better enable developing countries to apply TRIPS in a manner which allows them to effectively balance the protection of IPRs with public health needs, affirmed by the 2001 Doha Declaration. For instance, a compulsory license is one type of flexibility that can issued by national States to allow for cheaper, generic production of a patented health technology in certain circumstances. Such measures have traditionally faced several limitations, including but not limited to the threat of potential retaliation in the form of trade sanctions against States that have utilised such flexibilities. Such issues and other factors can deter States from using TRIPS flexibilities. Nonetheless, the ability to use such measures when needed to provide access to health technologies is important to better allow States to deliver on access to health and to fulfil States human rights obligations.

To conclude, as we reflect on IPRs and World IP Day in 2025, alongside some of the benefits of IPRs for society, there is also a need for greater consideration of the potential human rights implications of how IPRs can be used in the healthcare context. There is a need to ensure the incentivising function of IPRs is balanced in a manner which appropriately takes patients’ need for access into account. Such issues, including the role of the right to health, and the extent to which this right can offer an avenue for greater accessibility of patented health-technologies is a key theme explored within the ERC PatentsInHumans Project at Maynooth University.

With Prof Aisling McMahon (Principal Investigator, ERC PatentsInHumans), we are currently examining the impact of IPRs on the accessibility component of the right to health. We are also developing a deeper analysis of the role and scope of the right to health to be used at a national level by individuals and States to facilitate a greater balance between IP rightsholder interests and patients’ access to medicines. The theme of ‘accessibility’ including of health technologies, aligns with a core value of the ‘Assisted Living and Learning’ (ALL) Institute where this project is co-hosted with the School of Law and Criminology, Maynooth University.

You can find out more about the PatentsInHumans project, including ongoing work at: www.patentsinhumans.

The European Heritage Label and Persons with Disabilities

Research Stream: Social Structures

Author: Lazar Stefanovic, PhD, Research Assistant at ALL Institute, School of Law & Criminology, Maynooth University

The European Commission published the latest European Heritage Label (EHL) Monitoring Report in April 2025, coinciding with the announcement of the pre-selected EHL sites for 2025. This provides an opportune moment to assess these developments through the lens of accessibility for persons with disabilities at European heritage sites, which is the purpose of this blogpost.

The EHL promotes the shared cultural identity of European Union (EU) Member States. It started as an intergovernmental initiative in Granada in 2006, before being formally established with the Parliament and Council Decision in 2011. Its main goals are to foster a sense of European belonging, promote respect for cultural diversity, and encourage dialogue between different cultures (Lähdesmäki et al., 2020). The underlying aim of such actions is to contribute to the European integration, while respecting the cultural diversity of its Member States. This interplay between respecting and promoting the Member States’ cultural diversity and foregrounding a shared European identity is embedded in Article 167(1) of the Treaty on the Functioning of the European Union (TFEU). The EU’s limited competence in culture stems primarily from Article 167 of the TFEU, which prescribes a supplementary and facilitating role for the EU in the field of culture. The legal basis for the EHL is Article 167(5) TFEU, as the EHL is an incentive measure in the sphere of culture, implemented in accordance with the principles of subsidiarity and proportionality stipulated in Article 5 of the Treaty on European Union. Despite its limited competence in the field of culture, the EU adopts a multifaceted approach that reflects its three main roles in the cultural sphere: funding actions with European added value; funding and organising actions that enhance the sense of European belonging, such as the EHL; and making cultural policy choices in the internal market (De Witte, 2024). The EHL is the embodiment of one of the three major roles of the EU outlined by De Witte.

The Decision establishing the EHL is emphatic about ‘increasing and/or improving access for all’ as one of the crucial elements of sites involved in this action (Art. 3 of the Decision). Even though the Decision does not mention persons with disabilities specifically, the EHL sites should make every effort to ensure the accessibility for persons with disabilities in light with the EU general commitments to promote disability rights stemming from the Charter of Fundamental Rights (CFR) and the UN Convention on the Rights on the Rights of Persons with Disabilities (CRPD), concluded by the EU in 2010. In that regard, the EU is obliged to foster the social integration of persons with disabilities and ensure accessibility in the implementation of EU law. Accessibility of cultural goods and services, including cultural heritage, is tightly linked to social inclusion and participation in the community, as well as to the right to cultural participation. The former is mandated in Article 26 (integration of persons with disabilities) CFR, and the latter in Article 30 (participation in cultural life) CRPD. Additionally, Article 9 CRPD obliges parties to ensure accessibility to a wide array of facilities and services available to the public, such as heritage sites. Currently several pieces of EU legislation, including the European Accessibility Act, mandate accessibility of some cultural goods and services. In fact, accessibility provisions are scattered around different pieces of EU legislation creating a ‘jigsaw’ (Ferri, 2023), and is mainstreamed in other initiatives such as the EHL.

The latest EHL report examined whether heritage sites continue to meet the criteria for their EHL status. The review focused on two aspects of site functioning – action plans developed by the sites’ administration and their organisational capacities. Notably, for the purpose of this post, under the organisational capacity section, the reviewers also noted the sites’ accessibility for persons with disabilities. However, the methodology outlined in the EHL Report does not clearly indicate whether or how accessibility for persons with disabilities is weighted. Furthermore, most of the sites reviewed include an indication of their accessibility to persons with disabilities, although not all of them do. In several instances, however, reviewers only mention accessibility in general terms, such as public transport connections or availability of information in various languages of EU Member States (e.g. Archaeological Area of Ostia Antica), without specifically addressing accessibility for persons with disabilities. The absence of information on accessibility for persons with disabilities for some of the sites likely reflects insufficient prioritisation in the review process.

Looking more closely to the assessment included in the report, some of the sites were reported to be accessible to persons with physical impairments but not to persons with sensory or mental impairments (e.g. Aleksandrovo Tomb). Other sites are located in difficult terrain or even underwater (e.g. Azores’ Underwater Cultural Heritage), which significantly reduces the possibility for interventions to ensure access for persons with various disabilities. Furthermore, the report captures instances of tension between the preservation of sites and accessibility for persons with disabilities (e.g. Olomouc Premyslid Castle). Other reviews emphasise that accessibility has been improved through bespoke staff training on how to accommodate visitors with disabilities (e.g. Archive of the Crown of Aragon). Many of the sites improved their accessibility by leveraging digital accessibility and incorporating bespoke features into their websites, especially during the COVID-19 pandemic. The review also noted the use of advanced technology to ensure library access for persons with disabilities (General Library of the University of Coimbra).

Turning now to the 21 newly pre-selected sites, information on accessibility is limited. A review of their websites reveals that, currently, most of them provide little to no detailed information on the accessibility of the site. Positive exceptions include the Styrian Armoury in Austria, which clearly describes accessibility features, and Krzysztof Penderecki – European Centre for Music in Poland. Similarly commendable from a disability rights perspective is the St Paul’s Catacombs site in Malta, which offers detailed accessibility information and digital 3D reconstructions for otherwise inaccessible areas.

While many European heritage sites have improved accessibility significantly, others still have much to do. To comply with obligations under Article 30 CRPD and better fulfil Article 26 CFR, the EHL review process should place greater emphasis on accessibility for persons with disabilities. This can be achieved by requiring a prioritization of accessibility for persons with disabilities a mandatory criterion for EHL sites. When carrying out the periodic external and independent evaluation of the EHL, provided for in Article 18 of the Decision, clear recommendations should be issued in relation to increasing access to EHL sites for persons with disabilities. Further, the European Heritage Label Bureau – which has been operating EHL sites’ umbrella organisation to support the development of a “community of practice” – should release practical recommendations on a regular basis, and ensure systematic follow-up on how sites meet accessibility criteria. This focus would also encourage broader EU-wide compliance, ultimately ensuring that heritage sites are genuinely inclusive for all visito

Lazar Stefanovic, PhD, Research Assistant at ALL Institute, School of Law & Criminology, Maynooth University

The Advocacy Shift: From Silence to Empowerment in Clinical Psychology

Research Stream: Stories/Lived Experience

Author: Sarah Hooney, Research Assistant, Integrated Advisory Services, Maynooth University Assisting Living and Learning (ALL) Institute.

During my undergraduate degree, I completed a three-month assistant clinical psychologist placement in the Mater Misercordiae University Hospital, working within the National Centre for Inherited Metabolic Disorders (NCIMD). This experience deepened my understanding of clinical psychology – not just as a tool for diagnosis and treatment, but as a form of advocacy and justice.

The NCIMD is a multidisciplinary team treating rare genetic metabolic disorders, such as phenylketonuria (PKU) and Hunter’s Syndrome. Metabolic disorders can have very complex symptoms, including both medical and psychological impacts. For example, severe symptoms of untreated PKU include behavioural problems, developmental delays, intellectual disabilities, and even seizures. In the NCIMD unit, I observed that the psychologist’s role involved assessing cognitive and behavioural challenges in clients and helped develop care plans. Additionally, I saw psychologists offering mental health support for those navigating life with chronic illness. This involved providing the appropriate therapeutic methods or referral to a psychiatrist if alternative testing is required.

Clinical Team in a room with a screen with some wearing medical uniforms

Throughout my placement, I shadowed the team’s clinical psychologist, speaking with clients one-on-one and providing behavioural assessments where necessary. From the first week, it became immediately clear that the job description given to us prior to starting placement barely scratched the surface of what the job looked like day-to-day. I noticed how the psychologist often acted as a bridge between the client and the medical team—speaking up for them, supporting them beyond medical intervention, and helping their voice be heard. At times, while the consultants might be focused on what’s considered the best clinical option, the client may face negative psychological side effects that make treatment more burdensome than beneficial. In those cases, the psychologist seemed to advocate on the client’s behalf to help find a more balanced solution – one which improves the client’s quality of life but is also medically sound. In-clinic sessions appeared to allow clients to vent openly about the situational difficulties they are facing. In these sessions, the psychologist gains key insights and communicates with the rest of the team to help the development of collaborative, person-centred care plans.

Working with this group presented several ideas that I had the privilege of never having to consider before. The NCIMD is the only specialist centre in the country for metabolic disorders, meaning many clients travel long distances, face transport difficulties, or require disability accommodations to attend appointments. These issues can become significant barriers in both access to care and client wellbeing – and are central to whether a client can even engage with the services available to them. During my placement, I struck me how the psychologist often found themselves dealing with these concerns and ensuring that the care was as accessible as possible. Genetic conditions don’t account for geography, but these individuals still require the same level of care regardless of location. In these moments, the psychologist seemed to take on the advocacy role – not just offering emotional and cognitive support – but also helping ensure that no one is left behind due to where they live or the barriers they face within the system.

I had the opportunity to spend a brief time shadowing the senior clinical psychologist of the Renal Medicine Unit, which highlighted the nuanced differences in psychological work across medical specialties. In renal care, a multidisciplinary team – including consultant physicians, nurses, nutritionists, medical social workers, and psychologists – collaborate to support clients navigating the emotional challenges of chronic illness and managing mental health alongside physical symptoms. Psychologists contribute by assessing patients’ readiness for transplant by looking at treatment adherence, and by advocating for patients during major clinical decisions. Through building relationships with vulnerable individuals, psychologists provide insights that can influence outcomes, including decisions around eligibility for life-changing transplants.

Throughout my time at the Mater, I gained invaluable insights into the collaborative dynamics of patient care. I observed that, alongside assessments and therapeutic interventions, psychologists play a vital role in patient advocacy, ensuring that care plans are both clinically effective and personally meaningful. This experience underscored the importance of each team member’s contributions in delivering comprehensive and client-centred care. My main takeaway from the experience was that in clinical psychology, empathy, communication, and advocacy are just as crucial as clinical expertise. This experience strongly aligns with the mission of the ALL Institute, which is committed to interdisciplinary research that enhances the lived experiences of individuals with chronic illnesses. Just like in the ALL Institute, the clinical psychologist’s role involves advocating for systemic flexibility and finding creative solutions that make an inherently unfair situation as equitable as possible.

Sarah Hooney – Author

SWINS: Rethinking Social Services for a Sustainable Future

Authors: Alessia Palladino Research Assistant, Protecting the Right to Culture of Persons with Disabilities and Enhancing Cultural Diversity in EU Law: Exploring New Paths (DANCING) and Prof. Delia Ferri, Co-Director of ALL Institute and Professor of Law, Maynooth University.

Research Stream: Social Lives

On Thursday, 27^th of March, the School of Law and Criminology and the ALL Institute hosted an event to launch a new Horizon Europe project called SWINS- Sustainable Well-being through INvestment in Social Services.

SWINS wants to present a new framework for measuring the return of social services investment both in an economic and social perspective, considering how these investments influence key aspects of life like employment, income or economic growth, but also inclusive and sustainable well-being. SWINS aims to introduce a groundbreaking framework to measure the impact of social service investments from both economic and social perspectives. Therefore, ‘SWINS seeks to help policymakers determine where to allocate their resources, in order to be sustainable and yield the highest social returns’. In this respect the project speaks to the core objectives of the ALL Institute and to its ethos, and supports ALL’s comprehensive and human-rights based approach to social inclusion.

The SWINS project is coordinated by Università di Firenze – PIN ARCO, and includes a broad consortium of which Maynooth University is a member. The Maynooth team involves Professor Delia Ferri and Dr Charles O’Sullivan, who will specifically investigate the role of the European Union (EU) in supporting (or constraining) social investments. Prof. Ferri and Dr. O’Sullivan will carry out a ‘legal mapping’, focusing on state aid, competition and free movement law.

SWINS Logo

The event was warmly opened with welcoming remarks by Professor Fergus Ryan, Head of the School of Law and Criminology, and Professor Deirdre Desmond, Co-Director of the ALL Institute. Dr Federico Ciani, Coordinator of the Inclusive Development Research under ARCO, presented the core tenets and objectives of the project, highlighting how the EU is currently facing structural changes that require rethinking of the current model of social investments. In his talk, Dr. Ciani discussed the links between productivity and sustainable development, highlighting the necessity of providing a new framework for assessing these factors. In this connection, the role of SWINS will be pivotal in reconstructing the relation between social services and economic growth in a sustainable framework.

In their speech Prof. Ferri and Dr. O’ Sullivan highlighted how SWINS builds on a rights-based approach to social services and their deployment. They further discussed the potential role of EU law and policy in supporting investment in social services, considering the EU competences.

The event proceeded with a very thought-provoking presentation by Vincent Power, SC Adjunct Professor at Maynooth University School of Law and Criminology. Vincent Power focused on the role of the EU in enabling, rather than constraining, national investments in social services. He further highlighted that there still is a large margin for change, allowing for fundamental developments in the field of social services.

The idea of the EU as a constantly evolving legal entity was also picked up by Professor Bernardo Cortese, whose presentation revolved around social citizenship, debating its inclusivity in European societies. Prof. Cortese discussed the links between individuals and the community they live in, considering how the concept of society itself demands for rights. He also discussed the ‘diminished’ rights enjoyed by third country nationals and the ‘shades’ of EU citizenship in relation economically active and non-economically active citizens .

The event continued with a stimulating presentation by Prof. Juan Jorge Piernas López on state aid and its links to social services, considering both the national and EU competence in this field. Professor Leigh Hancher subsequently built on her experience as a legal practitioner and scholar to discuss the role of the EU in relation to housing services and sustainable energy, highlighting the challenges in reconciling EU and national competence. Dr Christopher McMahon then provided insightful comments on all presentations that gave inputs on the future of the SWINS research.

Picture of speakers in the event room L-R: Vincent Power, Karen Lynch Shally, Charles O'Sullivan, Federico Ciani, Leigh Hancher, Delia Ferri, Bernardo Cortese, Christopher McMahon

On the whole, the event afforded the opportunity to reflect on the need to conduct interdisciplinary research which responds to current challenges. SWINS emphasises that the EU can and will play a fundamental role in the evolution of social services, especially through the array of policy strategies it currently presents. At the same time, SWINS also embeds one of the core principle of the ALL Institute, that of Leaving No One Behind, a commitment that aligns with the EU’s broader social agenda.

Remote Work as Reasonable Accommodation: Insights from Italian and Irish Case Law

Author: Giulia Sberna – PhD candidate in Public administration and innovation for disability and social inclusion at the University of Palermo and University of Campania “L. Vanvitelli”; Visiting PhD Researcher at the School of Law and Criminology & the ALL Institute.

Research Stream: Social Structures

The new millennium has been characterised by the adoption of advanced technologies and new organisational models hat have transformed the work environment. In this new employment context, “flexibility” has become a buzz word: flexibility characterises job roles, but also the places where work is carried out, which have moved beyond the traditional confines of factories and public offices and into digital spaces, made possible by the use of the Internet and other ICT tools.

Remote working has thus become a symbol of this transformation, representing an innovative alternative to traditional organisational models. It has not only supported a better work-life balance, but has also opened up new opportunities for those who have historically faced greater barriers in accessing employment, particularly persons with disabilities. While it is not without drawbacks, remote working has provided a concrete means of overcoming mobility-related barriers and accessing job opportunities on a more equal footing, encouraging active participation in the workplace. This blog post reflects on recent Italian case law, which has begun to conceive of remote working as a typical form of reasonable accommodation. In doing so, the blog aims to offer some reflections that may spur a debate on strengths and pitfalls of remote working in other jurisdictions.

As established internationally by Article 2 of the UN Convention on the Rights of Persons with Disabilities (2006) (CRPD) and, at European level, by Article 5 of Directive 2000/78/EC, reasonable accommodation encompasses all modifications – whether to the environment or to job duties – that allow a person with a disability to work under conditions of equal opportunity. In this context, telework, smart working and remote working can be seen as appropriate and effective solutions, provided they are tailored to the specific needs of the individual worker.

The Italian Court of Cassation, in its recent judgment no. 605 of 10 January 2025, expressly recognised that remote working can indeed constitute a form of reasonable accommodation. As a result, the employer is obliged to provide it, unless they prove that such arrangement would impose an excessive or disproportionate burden on them.

The case in question concerned a worker with severe visual impairment who had requested to perform his duties remotely. The employer refused, arguing that internal company policy excluded remote working for that type of role. The Court of Cassation, after affirming that the principle of identifying reasonable accommodation to ensure equal treatment for persons with disabilities applies in the field of employment protection, considered the employer’s conduct discriminatory. In light of these considerations, the Supreme Court recognised the worker’s right to work remotely, clarifying that reasonable accommodations may be established through mutual agreement and, in cases of dispute, it is for the judge of first instance to determine the most suitable solution to protect the rights of worker with disability.

Therefore, the ruling of the Court of Cassation establishes a fundamental legal principle that may guide future disputes and contribute to strengthening the right of workers with disabilities to fair and non-discriminatory treatment. In fact, including remote working within the broad category of reasonable accommodations has the inherent effect of classifying an employer’s refusal to offer such working arrangements as a form of discrimination.

This Italian case might prove a source of inspiration for other jurisdictions. In Ireland, the employment rate of persons with disabilities is one of the lowest in Western Europe. According to reports from the National Disability Authority (NDA), many are unaware of the existence of the Reasonable Accommodation Fund, which is designed to support businesses in adopting these measures. The report “Reasonable Accommodations: Obstacles and Opportunities” describes a reality where clear internal policies are often lacking, and where concerns about costs or complex procedures discourage the implementation of inclusive measures. Yet, Irish courts had already embraced a broad notion of reasonable accommodation in the significant Nano Nagle School v. Daly (2019) decision. In that decision the Supreme Court recognised that measures such as reduced working hours, job modification, or redistribution of tasks can fall under reasonable accommodation, provided they are compatible with the effective functioning of the organisation. This approach aligns with the views expressed by the Court of Justice of the European Union in HK Danmark and subsequent case law.

At this juncture it is important to appreciate the strengths of remote work, which as EFC Remote Working Report 2021 showed, can enhance flexibility and autonomy for many people with disabilities. Yet this remote working has revealed some critical issues, including social isolation among workers with disability, reduced visibility within the organisation, limited access to assistive technologies, and the lack of adequate facilities for home-based work. Thus, it would be important to implement a working model that alternates between remote and on-site work. For example, through the creation of public and shared co-working spaces designed to encourage social interaction, collaboration among colleagues, and access to appropriate technological tools.

In conclusion, Italy has initiated a significant legal reflection on the role and pitfalls of remote working for persons with disabilities, one that is likely to influence both the European and international legal framework with the view to expanding protection for workers with disabilities.

Giulia standing beside screen where she gave a talk. The talk title shows on the screen 'Reasonable accommodation for workers with disabilities: challenges in digital environment

New Voices, Same Mission: Meet the new Editors joining Ideas in ALL

Research Stream: Editorial & Stories/Lived Experiences

Authors: Rachel McGettrick, Sharon Adedapo & Lauren Kane

Dear readers of Ideas in ALL,

As new editors joining the blog, we are extremely happy to take on this position. As we take up our role, we will strive to maintain the excellent standard and energetic impetus attained by our fellow editors and predecessors. The blog has become an influential academic commentary on contemporary physical, social, political, and conceptual dimensions of society in the twenty-first century.

Each of us wish to add a personal note below on our motivation and commitment to this blog, so that you get to know us better!

Rachel McGettrick

I’m Rachel and I am so excited to join the amazing Ideas in ALL team! I am a PhD researcher who first joined the ALL Institute in 2022 during my undergraduate degree in psychology, working as a research intern with the STEM Passport for Inclusion. This is an initiative led by Professor Katriona O’Sullivan that empowers young women from underrepresented backgrounds to pursue STEM education. This experience sparked my love for research and helped me see a future for myself in such a meaningful environment. Now, as a PhD researcher at Maynooth University, I feel incredibly fortunate to continue my journey within the ALL Institute—a space dedicated to inclusion, accessibility, and meaningful research impact.

Inclusion remains at the heart of everything I do. Alongside my continued work with the STEM Passport for Inclusion, I contribute to two interconnected projects – Pathways and Promote – which aim to foster a more equitable research environment, particularly for women and early-career researchers. These projects reflect the ALL Institute’s commitment to tackling systemic inequalities and ensuring that research is shaped by diverse voices. I am also involved with the Maynooth Access Programme (MAP), which encourages under-represented groups to enter third level and provides these groups with support through their time at Maynooth. As I embark on my PhD journey under Professor O’Sullivan’s supervision, I am exploring the impact of parental alcohol misuse (PAM) on children in Ireland. This research seeks to highlight an often-overlooked issue and develop an intervention to support these vulnerable children – in line with the ALL Institute’s broader mission, contribute to evidence-based policies and person-centred support systems.

Sharon Adedapo

I am delighted to join Ideas in ALL as part of the team! I recently joined the PatentsInHumans project as a Research Assistant, working under Professor Aisling McMahon at the ALL Institute. I completed my Undergraduate degree in Law and Business from Maynooth University in 2023 and recently completed my Master of Law (LLM) in 2024.

The PatentsInHumans project bridges the gap between bioethics and patent law, exploring how patents over health-related technologies, such as medicines, medical devices, gene editing techniques, and neurotechnology, interact with fundamental ethical considerations. The ultimate aim of the project is to reimagine European patent decision-making to better integrate bioethical principles.

What drew me to Ideas in ALL is the commitment to inclusive, accessible, and interdisciplinary research. My background in Intellectual property law, human rights, and technology has fuelled my interest in how emerging health technologies are governed, and the ethical challenges they present. I look forward to bringing these perspectives to the blog, helping to share research that sparks conversation, promotes accessibility, and drives meaningful change.

Lauren Kane

My name is Lauren, and I recently joined the ALL Institute as a Research Assistant on the ERC funded PatentsInHumans project, led by Professor Aisling McMahon. PatentsInHumans aims to explore the bioethical implications of how patents are used over health technologies related to the human body, with a view to reimagining the European patent system to adopt a more person-centred approach.

My interest in this area was sparked by the Myriad Genetics case, which related to an (ultimately successful) challenge to the patenting of genetic mutations which predicted a significantly elevated risk of breast and ovarian cancer (BRCA1 and BRCA2). Essentially, these patents were being used in such a restrictive manner that diagnostic testing could only be provided through Myriad Genetics, and at a significant cost which prevented access for many women. As someone who had personally undergone BRCA testing, this case made me consider how fortunate I had been to obtain access, and how I may have felt and the impact it could have had if this had not been possible. This really opened my eyes to the impact that the manner in which patents related to the human body are used can have over people’s health and motivated my interest in this area of research and social justice. As such, I was delighted to have the opportunity to join the PatentsInHumans team and Ideas in ALL Blog team. The core values of the Ideas in ALL Blog, such as inclusivity, accessibility, respect for diversity and participation really resonate with me. I feel excited to be part of the Ideas in ALL Blog team as I am passionate about accessibility and greatly value the opportunity to contribute to the blog and participate in the dissemination of interdisciplinary research which is accessible to all.

We are all excited to join this team and contribute to the values and mission of the Ideas in ALL blog. All three of us look forward to bringing our different experiences and areas of interest together to foster new collaborations and inspire innovative insights in both this blog and the ALL Institute as a whole. If you are interested in contributing to the Ideas in ALL Blog, please feel free to get in touch via email at ideasinall@mu.ie.

Breaking Barriers: New Tools to Make Culture More Accessible

Research Stream: Social Structures

Authors: Elodie Makhoul & Alessia Palladino, Research Assistants, ERC DANCING, Maynooth University

On Thursday, 13 March 2025, the ERC DANCING Project published two complementary outputs, a Toolkits for Cultural Organisations and a Resource List, both geared at cultural organisations and professionals in the Cultural and Creative Sector (CCS). These outputs aim to support the CCS in advancing cultural participation of people with disabilities, both as audience and professionals.

These outputs contribute to DANCING’s overarching aim of challenging the cultural exclusion often faced by people with disabilities and advancing cultural diversity and inclusivity across the European Union (EU). In particular, the Toolkit and the Resource List aim to raise awareness about barriers faced by persons with disabilities in the cultural domain and to highlight how cultural organisations can ensure inclusion and accessibility and ultimately inspire societal change.

The deployment and publication of this Toolkit and Resource List stem from DANCING’s empirical research and from a close collaboration with persons with disabilities and cultural professionals.

One of the main reasons underpinning the publication of these outputs is the recurring ‘loss’ of good practices. The empirical research undertaken in DANCING showcases that one of the challenges often faced by cultural organisations is that good practices developed remain isolated and often are ‘forgotten’. This happens because good practices are developed within distinct projects and are discontinued at the end of the project, or rely on the distinct expertise of certain employees, artists or cultural workers, and run their course following the exit or retirement of such experts. Further, while there are several good practices across the EU, there is no mutual learning. These outputs aim to address and counter these challenges and to provide guidance and useful information to cultural organisations, with a view to support the creation of a community of practice and the sharing of breakthrough practices.

DANCING Logo

The Toolkit is dedicated to support cultural organisations in their inclusivity journey towards ensuring greater accessibility in cultural spaces and enhancing diversity. The Toolkit provides cultural organisations with key information and recommendations to improve and advance the inclusion and cultural participation of people with disabilities in the CCS both as professionals and as an audience. This Toolkit raises awareness and improves the reader’s understanding of what facilitates cultural participation of people with disabilities and how to foster cultural diversity. It also presents all the preliminary information required to successfully develop an accessible and inclusive disability policy. By prioritising accessibility and inclusion, cultural organisations can reflect the inherent diversity of society, and reimagine the cultural landscape to fully involve people with disabilities both as audience and cultural professionals.

The second output is a non-exhaustive Resource List showcasing existing initiatives improving the cultural participation of people with disabilities as well as the relevant fundings making these efforts possible, both at the EU level and at the local level in all the EU Member States and in the UK. This Resource List developed by DANCING complements the Toolkit. By highlighting relevant projects, initiatives, toolkits, reports and other resources produced by other projects or organisations advancing the cultural participation of people with disabilities, it aims to foster collective learning and knowledge sharing. Further, this Resource List can also support a better understanding of suitable funding streams which could enhance inclusion of people with disabilities in the CCS.

Advancing the cultural participation of people with disabilities requires reaching a large and diverse body of stakeholders, from cultural institutions to organisations of persons with disabilities and from policymakers to civil society. Hence, DANCING has developed tailored tools and resources designed to meet the specific needs of various stakeholders who have the potential to contribute to greater inclusion. By customising tools and strategies for each of these stakeholders, DANCING hopes to support the development of meaningful change that is both practical and impactful. The Toolkit for Cultural Organisations and the Resource List are developed within DANCING’s objective of creating ‘Tools for Change’. While DANCING – as an ERC funded project – has primarily a scholarly focus, it has also developed tools addressed to a wider audience. This approach aligns with research findings that highlight the importance of raising awareness of academic blue-sky scholarship (Linden, 2008) and of ‘democratising’ academic advancements. This approach also aligns with the ethos of the UN Convention on the Rights of Persons with Disabilities and ensures that people with disabilities can reap the benefits of cutting-edge research.

On the whole, these ‘Tools for Change’ developed by DANCING advance the dissemination and enhance the impact of the project, reaching specific stakeholders and ultimately improving the right to cultural participation for people with disabilities.

An undergraduate’s perspective of experience working in academia: ‘SPUR-ring on’ Mental Health

Research Stream: Lived Experience

Author: Isolina Busto Gilligan, BA International Psychology Student, Summer Programme for Undergraduate Research (SPUR) 2024 Intern, Department of Psychology, Maynooth University

This summer I participated in the Summer Programme for Undergraduate Research (SPUR) in Maynooth University. SPUR is an opportunity for undergraduate students to experience what it’s like to work and research in an academic setting. It takes place over six weeks and students work under the guidance of a researcher in the University while also completing a workbook to further hone their research and professional skills. My SPUR mentor was Dr Sadhbh Byrne of the Psychology Department. The project I worked on with Sadhbh was called PRISM (PRovision of Informal Support for Mental Health). This project, in collaboration with Mental Health Ireland and funded by Research Ireland is investigating the support given by young people to friends who are going through a tough time. The project was co-designed with an advisory group of young people aged 18-25 with lived experience of providing support to a friend. The project aims to discover the type of support given to friends, the experience of giving this support, and whether supporters perceive any need for support or resources.

Little research has been done on the type of support given by young people to their friends, and their experience with providing the support, so I was very excited to be a part of this project and to help increase knowledge of this important subject and to extend the body of research that is available. I was also excited to be a part of this project because of the co-design aspect, meaning that everything in the project (from the wording of the questions, to the way it was advertised to the public) was designed and decided on by young people with actual lived experience of supporting a friend going through a tough time, making the project more accurate and relevant to the young people it was researching.

My main role in the project was to investigate research dissemination strategies and to look for effective ways of disseminating findings to a young audience. Dissemination involves communicating research findings to target audiences. We wanted the results of the project to reach its main target audience (young people ages 18-25), rather than only reaching academics and experts in the field of mental health (people who mainly read and have access to academic journals). We wanted others to be interested in the results of the project and for the research to have an impact on young people in particular. To reach this goal, I started by doing a literature review on youth dissemination strategies and searched for dissemination case studies. These case studies will be used as examples and ideas, both good and bad, to guide the development of the dissemination strategy the PRISM project will use. I also investigated important considerations for dissemination, and identified relevant frameworks as well as facilitators and barriers to effective dissemination. I then presented my findings to the research team and received feedback and support on my work. Lastly, when I had finished my research, I developed co-design workshop materials based off my findings to be used in a workshop with the advisory group so they can decide on the best dissemination strategy for the PRISM project findings. I also got the unique opportunity to visit Mental Health Ireland’s head office and learn about the work they do there, which was very interesting and a nice change of pace.

As well as working on dissemination strategies and the literature review, I assisted with participant recruitment. Participant recruitment is a vital part of research, but few people get to learn how it works before doing it themselves in their own projects. I now have a clearer idea of the amount of work involved in participant recruitment, which is something people might overlook when planning a research project to begin with. I also learned about other aspects of research such as ethics and funding thanks to my mentor Sadhbh who explained these to me and gave me guidance throughout the project. I feel I improved not just my research skills, but also my professional skills and my ability to work as part of a team and build professional relationships, which is something that is important in any job. I enjoyed this experience and the opportunity to do something different. I enjoyed working on the co-design materials and presenting my findings after doing all the work and putting in so much effort. My findings were presented in a research poster in the SPUR symposium which took place in October. I especially enjoyed creating and designing the poster as I got to use my own creative flair while also putting my research findings to the test by using some of the effective dissemination strategies that I had found.

This internship not only helped me to improve on my professional and research skills but also gave me a great insight into academia and the ins and outs of running a research project. I gained a great understanding through this work and had the rare opportunity (for undergraduates) to peek behind the curtain of what lecturers and tutors do day-to-day when they’re not teaching us students!

Endometriosis – A Hidden Disability

Author: Cassandra Murphy – PhD Researcher in the Department of Psychology and IdeasInALL editor.

Research Stream: Lived Experience

Yellow Ribbon on grey background with text stating March is Endometriosis Awareness Month

March is a month for shining a light on women’s health For many, this is a time of activism, and a time to push forward the basic needs of those in chronic pain. March is Endometriosis Awareness Month.

Endometriosis is a chronic condition that statistically affects 1 in 10 individuals with female reproductive organs worldwide. This condition often involves debilitating pain for those who suffer, leaving them missing out on school, work and social activity. To put this condition into context, 1 in 10 people worldwide are diagnosed with diabetes. Now, consider the fact that endometriosis only affects half of the population, that figure is striking. More striking again is the fact that in Australia, a country well known in the endometriosis community for its pioneering research and proactive attitude to endometriosis, it is believed this figure is actually 1 in 7. Why might this figure be so different across countries? The answer is because of ‘access to diagnosis’.

On average it is believed to take up to 11 years to get a diagnosis in Ireland for endometriosis. This is not an Ireland-only issue – this is a worldwide delay. One of the reasons behind this is the fact that the symptoms can be quite similar to other conditions. As per the Endometriosis Association of Ireland’s website, the common symptoms are: Painful Menstruation, Pelvic Pain (that radiates down the legs or up the back), Painful Intercourse, Bowel Problems, Fatigue, Premenstrual Syndrome, Abnormal Menstrual Bleeding, Painful Urination and Infertility. However, these are only the common symptoms. This is quite an individualistic and full body disease which has even been linked to immune-dysfunction.

Endometriosis is characterised by endometrial-like cells (similar to the cells that make up the lining of the uterus/womb) growing in other parts of the body. These cells can cause inflammation, leading to the extreme levels of pain individuals suffer. Up until 2022, it was believed that endometriosis has the potential to be found on any organ, except for the spleen. While most common in or around the reproductive organs (ovaries, uterus, rectum, bladder) it has been found as far away as the brain. However during the laparoscopic surgery of a young woman, and in the subsequent pathology report, endometriosis was discovered in a splenic cyst. Based on the location of the cells the symptoms may not be in the GPs list of ‘typical’ symptoms to look out for. Symptoms include brain fog, nerve pain, shortness of breath, lymph node swelling (similar to lymphoedema), shortness of breath and even mental health conditions to name a few. It is no shock that doctors are struggling to identify it in consultations, as they may be looking for the wrong thing. However, even when patients identify with text-book symptoms, they are getting dismissed as it is “just a bad period pain,” but clearly, it is so much more than that.

If you find yourself asking “if the pain is that bad, why is it not classified as a disability?” you are not alone! It is shown that up to 88% of individuals report a disruption to some element of their life (social, academic or work), leading them to miss out on daily activities due to symptoms of endometriosis. This is a conversation that was raised for the Oireachtas in 2021 by Deputy Clair Kerrane, and again just last month by Deputy Marie Sherlock. The issue is that a diagnosis of endometriosis does not automatically mean that your life is interrupted or that it interferes with your daily activities. For many, the endometrial-like cells can lay dormant and do not interfere with life until the individual is trying to conceive. Anywhere between 25% and 50% of infertility cases involve endometriosis. For many of those people, they do not find out until tests are run to screen for infertility. However, consideration needs to be taken for those who are suffering daily, misdiagnosed with Irritable Bowel Syndrome, Fibromyalgia or ‘painful periods’, and spend 11 years or more being told that the pain is in their head.

Maynooth University at large is at the forefront of research on the topic, with researchers in different Schools and Departments engaging with how best support of people experiencing this chronic illness. Research on endometriosis also speaks to the ALL Institute ethos and aligns closely with the mission of the ALL Institute where we are dedicated to interdisciplinary research that improves the lived experiences of individuals with disabilities and chronic illnesses, advocating for policies and innovations that enhance accessibility and quality of life.

Currently, endometriosis does not have a known cause or a cure. However, there is now a large body of passionate individuals who are working to explore a cure, or at least some urgently needed relief measures, for endometriosis. This March, talk to your loved ones about endometriosis. Endometriosis UK shared that “33% of women do not know what endometriosis is and 45% cannot name any of its symptoms and 74% of men do not know what endometriosis is.” Now that you have read this blog, you can change that. Support those with ‘painful periods’ and let us stop normalising women’s pain.

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