Social Structures – 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/

‘

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

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

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.

Ending ‘Disabling Cities’ through Human-Centred Urban Living: A Closer Look at the ‘15th European Union (EU) Access City Awards Ceremony’

Research Stream: Social Structures

Author: Matthew McKenna, PhD Researcher at Maynooth University’s Assisting Living and Learning (ALL) Institute, Research Funded through the Science Foundation of Ireland (SFI) Centre for Research Training in Advanced Networks for Sustainable Societies (ADVANCE CRT)

Friday 29^th November 2024 witnessed the announcement of the winning contending cities for the 15^th ‘EU Access City Awards Ceremony’ (Access City Award 2025). With the launch of the EU Access City Awards in 2010 during the first year of the European Disability Strategy 2010-2020, the EU took an initial but important step towards a more accessible future for all, irrespective of age, mobility or disability. The European Commission (hereinafter referred to as the ‘Commission’) in coordination with the European Disability Forum, created the Access City Award to “reward cities that have prioritised accessibility for persons with disabilities”.

The website of the Commission states that the “Access City Award recognises and celebrates a city’s willingness, ability and efforts to become more accessible, in order to:

Guarantee equal access to fundamental rights;
Improve the quality of life of its population and ensure that everybody – regardless of age, mobility or ability – has equal access to all the resources and pleasures cities have to offer”.

The United Nations (UN) Department of Economic and Social Affairs argues that ‘persons living with disabilities are often the poorest and most vulnerable in cities today’. Indeed, while cities in the twenty-first century are experiencing rapid growth as populations shift from rural dwellings to urban areas in search of employment and greater economic prosperity, increased costs of living alongside inaccessible urban planning, transport infrastructure and architecture, render most cities inaccessible and inundated with hazards for persons with disabilities. Furthermore, cities around the world are experiencing rapid gentrification and rising costs of living, therefore increasing the socio-economic disadvantages that are often experienced by persons with disabilities as a vulnerable demographic.

Although remote working and increased employment prospects in the cyber domain have arguably aided developed countries in creating further career opportunities for persons with disabilities, such initiatives are still in their infancy and are largely confined to the most economically developed states. In the contemporary era, cities around the planet are largely representative of the concept of the ‘disabling city’. Inaccessible built environments can contribute to traditional aspects of ableist social, economic and political marginalisation which often leads to the exclusion of persons with disabilities from cultural, public and private life. As such, the rallying cry and core ethos of ‘nothing about us without us’ in civic policy is even more difficult for people with disabilities to achieve when the architectures of modern cities remain hostile, marginalizing, and hazardous to their person.

In conjunction with the challenges posed by ableist architecture in contemporary global cities, ableism often intersects with ageism in city life as urban renewal and regeneration projects can contribute to rising costs and increased gentrification. This threatens the ability of older adults to ‘age in-place’ in an environment where they may have spent their entire lives. In turn, this can result in older adults, including those with disabilities, falling below the poverty line. Rapid technological progress and the exponential growth of high-tech computational industries over the past decades has led to increasing levels of marginalisation and unfamiliarity with changes to urban dwelling among a significant proportion of older adults. On 29^th September 2015, the ‘United Nations Independent Expert on the Enjoyment of all Human Rights by Older Persons’, Rosa Kornfeld-Matte, said:

“We need to re-think our cities. Over 900 million older persons will be living in cities across the world by 2050, but our cities are not fit for this global demographic revolution”.

The Commission provides an overview of the values that underpin the Access City Award, encouraging cities to address these new age challenges, specifically by describing it as a ceremony for, “recognising cities that have worked to become more accessible for their citizens”.It is an EU initiative that:

Recognises efforts by cities to become more accessible
Promotes equal access to urban life for people with disabilities
Allows local authorities to promote and share their best practices

Additionally, commonplace modalities and trajectories of urban development are often decided by economic requirements in the form of accommodating big businesses, heavy goods traffic, tourism, rapid mobility and regular transport for millions of people; profit and business comprise the historic approach that engenders traditional urban development. The Commission provides the following definition of a ‘Smart City’:

“A smart city is a place where traditional networks and services are made more efficient with the use of digital solutions for the benefit of its inhabitants and business”.

As such, while the future of urban development and the advent of the Smart City has brought humanity to the cusp of a new epoch, it is only through inclusivity and an emphasis on a human-centred approach that cities will become fully inclusive of all, irrespective of age or ability. As UN Secretary General, António Guterres, said on World Cities Day on October 31^st 2020:

“When urban communities are engaged in policy and decision making, and empowered with financial resources, the results are more inclusive and durable. Let’s put our communities at the heart of the cities of the future”.

It is therefore imperative that the principle of ‘nothing about us without us’ underpins the future of urban planning and development alongside the creation of Smart Cities and that the UN, EU and international civil society work together to achieve significant consensus on accessible smart cities and build a mutual understanding that the future of urban environments will be wholly inclusive. People with disabilities are entitled to a leading role and an active voice in the design and development of modern, inclusive, accessible and high-tech built environments.

The European Accessibility Act and the EU ‘Marrakesh Package’: Will We Still Need the Marrakesh Directive and Regulation in June 2025?*

Research Stream: Social Structures

Author: Delia Ferri, Principal Investigator, Protecting the Right to Culture of Persons with Disabilities and Enhancing Cultural Diversity in EU Law: Exploring New Paths (DANCING)

The adoption of the Marrakesh Treaty to Facilitate Access to Published Works for Persons Who Are Blind, Visually Impaired, or Otherwise Print Disabled (Marrakesh Treaty) by the World Intellectual Property Organisation (WIPO) on 27 June 2013 has been heralded as historic and groundbreaking by scholars, policy makers and disability activists alike. In fact, the Marrakesh Treaty is the first treaty entirely based on exceptions to copyright, and the first WIPO treaty to address the rights of persons with print disabilities to access cultural material.

In a nutshell, the Marrakesh Treaty requires Parties to enact a copyright exception in their national legislation to facilitate the availability of works in accessible format copies for the benefit of blind persons, visually impaired people, persons with a perceptual or reading disability and those who are ‘otherwise unable, through physical disability, to hold or manipulate a book or to focus or move the eyes to the extent that would be normally acceptable for reading; that cannot access effectively printed material’. Enthusiasm has also surrounded the EU ratification of the Marrakesh Treaty and the ensuing adoption of the so-called ‘Marrakesh Package’, which is comprised of Directive (EU) 2017/1564 and of Regulation (EU) 2017/1563. However, approximately seven years after the adoption of the Marrakesh package, its usefulness and timeliness has been called into question. Alongside its inherent limitations, already commented upon in previous articles, the coming to effect (in June 2025) of accessibility requirements provided for in the Directive (EU) 2019/882 on the accessibility requirements for products and services, better known as European Accessibility Act (EAA), has raised doubts as to whether the Marrakesh Package has still a role to play in supporting access to printed material for persons with disabilities. This blog post briefly highlights, on foot of previous research and qualitative interviews conducted within the remit of the project DANCING, funded by the European Research Council, why the EAA and the Marrakesh Package need to be seen as complementary, and pieces of what I have elsewhere called the ‘accessibility jigsaw’.

Professor Delia Ferri smiling and wearing black

The ‘Marrakesh Package’ in a Nutshell

The Marrakesh Directive, widely commented upon by copyrights scholars, introduces a mandatory exception to the harmonised rights of authors, empowering beneficiaries (i.e. people who are blind, have a visual impairment, people that have a perceptual or reading disability and people who are otherwise unable, due to a physical disability, to hold or manipulate a book or to focus or move their eyes to the extent that would be required for reading) and authorised entities (AEs) to convert a printed work into an accessible format without prior authorisation of the copyright holder. In substance, the Marrakesh Directive allows, without prior authorization of the copyright holder, conversion of existing printed material (books, newspapers, magazines, sheet music, and related illustrations and any other kind of written works, regardless of the media in which they are made available) in accessible formats (e.g. the creation of an audiobook from a printed volume) and the reproduction of accessible format copies (making additional copies of books in Braille). The Regulation, which is complementary to the Directive, provides for a copyright exception allowing for the cross-border exchange between EU Member States and Non-EU Member States who are party to the Marrakesh Treaty of accessible format copies of certain works that are ordinarily protected by copyright.

The EAA and Accessibility of Printed Material

Without engaging in the technicalities of the EAA, which I have commented on generally in an article published in the European Law Review in 2020, for the purpose of this brief blog, it suffices to highlight that it provides for a wide obligation for publishers to address accessibility concerns ex ante and produce accessible e-books. In fact, it has been highlighted that, when it comes to ebooks ‘the EAA is very thorough’ as it ‘takes into account the whole value chain from book production to consumption’. Although the EAA was enacted in 2019 and should have been transposed by the Member States by 2022, accessibility obligations will come into effect from 28 June 2025.

The EAA and the Marrakesh Package

The imminent coming into effect of EAA accessibility obligations has prompted some publishers to suggest that, in fact, the Marrakesh Directive in particular has lost, at least partially, its relevance. The Fédération des Editeurs européens highlights that the EAA is “a game changer in terms of the commercial availability of accessible books” and the enhanced availability of commercially available accessible copies should prompt for a careful approach in terms of disability copyright exceptions which should be reflected in any revision. The Fédération des Editeurs européens suggests that AEs should be able to “focus even more on cooperation with stakeholders, to avoid duplication and conflict with the commercial exploitation” of works, and similar arguments are put forward by the French Publishers Association (SNE). However, as highlighted in the recent “Study to support the evaluation of Directive (EU) 2017/1564 and of Regulation (EU) 2017/1563, which implement into EU law the Marrakesh Treaty to Facilitate Access to Published Works for Persons Who Are Blind, Visually Impaired, or Otherwise Print Disabled”, the EAA and the Marrakesh Package diverge in their material and personal scope and do not clash or overlap. The EAA in fact will improve availability of ‘born-accessible’ works. However, it will only cover one format, that of e-books, and only apply to works published in digital formats after the cut-off date of 28 June 2025. Notably, the EAA has also a different personal scope than the Marrakesh Package. While the EAA covers people with disabilities, meaning that ebooks will need to be accessible to all people with disabilities (not just people with print disabilities). Further, given that the EAA does not apply to micro-enterprises, it substantially exempts small publishing houses from its obligations.

The qualitative research conducted in the DANCING project from the perspective of organisation of persons with disabilities further highlights that the EAA, in spite of its importance to support access of people with disabilities to printed material, neither diminishes nor hampers the relevance of the Marrakesh exception to copyright, which needs to be applied consistently. In particular, qualitative data collected through 10 semi-structured interviews with umbrella disability organisations active at the EU level – designed, deployed and conducted between June 2023 and January 2024[1] – revealed the need to fully and consistently apply the Marrakesh copyright exception and confirmed the importance of the Marrakesh Treaty and of the EU legislation transposing it. A thematic analysis ‘a la’ Braun and Clarke, unveiled that persons with disabilities do see the Marrakesh package as ‘one of the key initiatives from the EU on access to culture for persons with disabilities’ (NGO/OPD_1). One participant further added:

we have heard from certain industry that since now we have the European Accessibility Act that maybe the Marrakesh Treaty is not needed and that is entirely not true… Because I mean even if the Accessibility Act cover ebooks, which are important for access to culture obviously and education, this doesn’t mean that the Marrakesh Treaty is not needed… [by contrast it is essential] to have accessible formats specifically designed for persons with disabilities such as braille, ebooks, DAISY, you know, easy to read books etc. So we see that some industry players are using the Accessibility Act to say, hey now the Marrakesh Treaty is not needed anymore. And that is obviously not true… (NGO/OPD_1)

Another interviewee suggested that

…the [Marrakesh Package] have had a very significant impact and not even fully felt yet …. and I know we have been working a lot with national organisation[s] for blind people… around access to increasing access to alternative formats and … with […] publishers around making books accessible in alternative formats so if you need a digital version that you can listen to with your text to speech that you can get that really easily and quickly. Which is, I think, such a transformation from the past (NGO/OPD_9)

This tallies with the consideration that digital publishing is still relatively underdeveloped and uneven across the EU. Thus, regardless of the different scope of the two acts, the Marrakesh package is also perceived as essential because of existing accessibility shortcomings in the publishing.As one interviewee suggested that ‘[n]ot all the industries are on top of things when it comes to accessibility…’ (NGO/OPD_6). Interviewees also confirmed, in line with previous research, that the Marrakesh Package has stimulated access to, and enhanced availability of, printed material in accessible formats. Such impact is destined to remain even after June 2025.

[1] The project encompassed a wide set of interviews. This particular dataset comes from 10 interviews with representatives of umbrella non-governmental organisations (NGOs) working on disability issues at the EU level and organisations of people with disabilities (OPDs). For the purpose of this research, OPDs were identified according to the definition proffered by the CRPD Committee in its General Comment No. 7. The CRPD Committee ‘considers that organizations of persons with disabilities should be rooted, committed to and fully respect the principles and rights recognized in the Convention. Ethical approval was obtained by the relevant Maynooth Ethics Committee.

*This blog post is a short dissemination output of the project entitled ‘Protecting the Right to Culture of Persons with Disabilities and Enhancing Cultural Diversity through European Union Law: Exploring New Paths – DANCING’ which commenced in September 2020 (https://ercdancing.maynoothuniversity.ie/). This project has received funding from the European Research Council (ERC) under the European Union’s Horizon 2020 research and innovation programme (Grant Agreement No 864182). It reflects only the author’s views and does not necessarily reflect those of the European Union or the ERC. I am grateful to Dr. Ann Leahy and Ms Eva Krolla for their support in the data collection process and in carrying out the interviews. I also wish to acknowledge with thanks the contributions of interview participants.

The Big Race: Artificial Intelligence and Healthy Ageing

Research stream: Social Structures

Author: Ilia Marcev, PhD Candidate at the Department of Psychology, Maynooth University, and a Research Assistant with the ALL Institute’s SHAPES Project

Unless your internet connection has been as unreliable as the weather forecast, or you were marooned on a desert island over the past few weeks, there is a strong chance you heard of the alleged “alien” bodies discovered in Mexico recently. While this strange discovery made international news, it drew very poor engagement and attention from the average UFO-enthusiast, let alone the average person like you and me. I believe it is fair to say that ten years ago this story would have exploded like a supernova across the internet, but today, the majority of people seem rather unconcerned with this novel development in humanity’s timeline. I can only speculate that the reason the world is unconcerned with potentially discovering our Martian neighbours is because, as exciting as alien intelligent life may sound, we are likely far closer to discovering new intelligent life here on Earth that would rival our own. This new intelligence is better known as – Artificial Intelligence (A.I.).

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this: