Ideas in ALL

The Regulation of Assisted Human Reproductive Technologies in Ireland: Ethical, Legal & Societal Considerations – Recent Developments and Maynooth Workshop

Research Stream: Lived Experiences

Authors: Prof Aisling McMahon, Professor of Law, Department of Law and Criminology and ALL Institute, Maynooth University. Alanna Kells, PhD Candidate in the Department of Law and Criminology, Maynooth University.

Introduction

On the 24th and 25th April 2025, Prof Aisling McMahon and Alanna Kells (PhD Candidate), School of Law and Criminology, Maynooth University, hosted a timely multi-disciplinary workshop examining the ‘Regulation of Assisted Human Reproductive Technologies in Ireland: Current, Emerging & Future – Ethical, Legal and Societal Considerations’ in Maynooth University.

Over the course of two days, the workshop brought together 20 leading national and international speakers drawn from a range of academic disciplines and practice, including law, business, health, social sciences, ethics, and clinical practice. The workshop focused on examining the ethical, legal, and societal issues related to the regulation of emerging assisted human reproductive technologies in Ireland and internationally. It focused on two key aspects: first, it examined the recent Health (Assisted Human Reproduction) Act 2024 (which was signed into law in Ireland on 2nd July 2024, and is currently awaiting commencement) and how provisions within this Act will address emerging ethical, legal, and societal issues in the field; Second, and relatedly, papers also examined the ethical, legal and societal issues posed by emerging assisted human reproductive technologies more generally and the implications of such developments for Irish and international regulatory frameworks.

Health (Assisted Human Reproduction) Act 2024

The Health (Assisted Human Reproduction) Act 2024 provides for a tailored legal and regulatory framework for assisted human reproduction in Ireland, including providing for the establishment of a new regulatory body, the Assisted Human Reproduction Regulatory Authority (AHRRA). The Act is comprised of 13 parts and 7 schedules. It includes provisions related to embryo and gamete (egg or sperm) donation; the storage of gametes, embryos and tissues; posthumous assisted human reproduction; pre-implantation genetic testing, and surrogacy. The Act (once commenced) will operate within various existing national and international legal frameworks, including, amongst others, relevant provisions of the Irish Constitution, European Union law etc. Its interpretation will need to consider the human rights of the various parties involved, including relevant human rights protections under the European Convention on Human Rights. Furthermore, the Irish Health Products Regulatory Authority (HPRA) plays an important role in this context in Ireland, including in the regulation of the safety and quality of tissues and cells for use in human treatment such as in fertility context, and the regulation of relevant establishments involving in the processing, preservation, storage etc of human tissues and cells

We currently await the commencement of the Act. However, in October 2024, the then Minister for Health Stephen Donnelly secured government approval to draft amending legislation to the Health (Assisted Human Reproduction) Act 2024. At that time, it was reported that this amending legislation will include provisions that aim to address and provide greater clarity for Irish residents/citizens undertaking donor-assisted human reproduction (DAHR) procedures abroad, and for Irish citizens living abroad who access DAHR or surrogacy abroad to have their legal parentage recognised in Ireland (where this is not already the case). The amending legislation has not yet been published, however, in February 2025, Minister for Health Jennifer Carroll MacNeill described the drafting of the Amendment Bill, Health (Assisted Human Reproduction) (Amendment) Bill, as ‘well underway’ and that ‘[…] while the drafting process is still ongoing, a defined list of amendments to the AHR Act 2024 cannot be provided.’ She further noted that while a ‘definitive timeline’ for the Bill to be brought to Cabinet could not be given at that stage, she wished to ‘[…] progress this much-needed legislation as soon as practicable fundamentally so that a robust regulatory framework for AHR in this country is put in place.’

The Health (Assisted Human Reproduction) Act 2024 is an historic development in the regulation of assisted human reproductive technologies in Ireland. The need for a tailored regulatory framework in Ireland for assisted human reproduction has been called for in Ireland for many years. The adoption of the Act comes almost two decades after the publication of the Report of the Commission on Assisted Human Reproduction in Ireland (April 2005). Thus, the Health (Assisted Human Reproduction) Act 2024 is much welcomed in providing clarity in relation to various aspects of the law related to assisted human reproduction in Ireland. Nonetheless, ongoing consideration will be needed around how the Act, once commenced, will be interpreted and apply in various contexts and the extent to which it will address the various (often complex) ethical, legal and societal issues arising in the assisted human reproductive context, particularly given the pace of emerging technologies in the field.

Workshop Key Themes

Given the recent adoption of the Health (Assisted Human Reproduction) Act 2024, alongside the ongoing developments in the field more generally, this workshop provided a timely opportunity to consider the ethical, legal and societal issues relevant in terms of the Irish context, and also the regulation of emerging technologies in the field. Over the two days the workshop featured presentations by 20 leading national and international experts on assisted human reproduction from a range of disciplines and practice, including law, ethics, embryology, and clinical practice.

Speakers discussed two key aspects of the legal framework governing assisted human reproduction in Ireland. First, they examined the Health (Assisted Human Reproduction) Act 2024, considering how this new legislation will interact with existing legal, constitutional, and regulatory frameworks. Speakers also explored how specific provisions of the Act aim to address longstanding ethical, legal, and societal issues in this area, including matters related to surrogacy and the use, storage, and donation of gametes (sperm and eggs) and embryos.

Alongside this, the workshop featured papers examining ethical, legal and societal issues arising around the regulation of emerging assisted reproductive technologies and broader developments in the field including around the regulation of emerging assisted human reproductive technologies. These included consideration of: mitochondrial donation techniques, which are currently permissible in certain limited circumstances in some jurisdictions such as the UK. These techniques involve replacing mitochondria in an egg to prevent the transmission of certain severe mitochondrial disease; It also considered other technologies currently under development, which may be possible in future, such as: gametogenesis, a process by which eggs and sperm are created from human stem cells; and ectogenesis, the development of embryos or fetuses in artificial wombs outside the human body. These types of emerging technologies raise novel questions about the nature of assisted human reproduction, parenthood, and family formation. Discussions at the workshop considered a range of ethical, legal, and societal challenges related to such emerging technologies, how these issues are being considered in other jurisdictions, and the potential future implications for the Irish context, including for the operation of the Health (Assisted Human Reproduction) Act 2024, once commenced.

Approximately 30 participants attended over the course of the two-day event, which featured timely multi-disciplinary discussions from leading experts in law, ethics, healthcare, and reproductive science. A full report on the workshop is available here.

Conclusion

In short, the Health (Assisted Human Reproduction) Act 2024 is a very welcome and long-overdue development, and the commencement of this Act as soon as possible is encouraged. Nonetheless, in terms of its impact, much will likely depend on how the Act is interpreted in practice once commenced. Furthermore, given the rapid pace of scientific developments in the assisted human reproduction field, ongoing multi-disciplinary dialogue is critical to the regulation of this area in Ireland and internationally, in order to pre-empt and engage with the likely ethical, legal and societal issues arising to ensure that legal frameworks are as responsive as possible to future developments in the assisted human reproduction field.

It is a picture of attendees at the workshop. Left to Right; A. Campbell, C. McGovern, N. Richardson, A. Kells, N. Maddox, F. Duffy, M. Wingfield, L. Bracken, J. Cloherty, A. Hayes, B. Tobin, P. Thompson, M. Donnelly, L. van de Wiel, I. Turkmendag, C. Romanis, L. Donovan, A. McMahon, S. Masterson, S. Adedapo. — (L-R) A. Campbell, C. McGovern, N. Richardson, A. Kells, N. Maddox, F. Duffy, M. Wingfield, L. Bracken, J. Cloherty, A. Hayes, B. Tobin, P. Thompson, M. Donnelly, L. van de Wiel, I. Turkmendag, C. Romanis, L. Donovan, A. McMahon, S. Masterson, S. Adedapo.

Acknowledgments: The organisers are very grateful to the workshop speakers and participants for attending and participating in this workshop. Speakers and participants were (listed in alphabetical order by surname): Sharon Adedapo, Research Assistant, School of Law and Criminology, Maynooth University; Dr Lydia Bracken, Associate Professor in Law, University of Limerick; Dr Aoife Campbell, Merrion Fertility Clinic; Prof Marian Crowley-Henry, School of Business, Maynooth University; Professor Mary Donnelly, University College Cork, Ireland; Jenny Cloherty, Health Products Regulatory Authority; Professor Edward (Ted) Dove, School of Law and Criminology, Maynooth University; Fiona Duffy, Solicitor, Patrick F. O’Reilly and Company Solicitors; Anne Hayes, Health Products Regulatory Authority; Lauren Kane, Research Assistant, School of Law and Criminology, Maynooth University; Opeyemi Kolawole, Postdoctoral Researcher, School of Law and Criminology, Maynooth University; Alanna Kells, PhD Candidate, Maynooth University; Dr Neil Maddox, Associate Professor, School of Law and Criminology, Maynooth University; Dr. Claire McGovern, Assistant Lecturer, School of Law and Criminology, Maynooth University; Sinéad Masterson, School of Law and Criminology, Maynooth University; Professor Aisling McMahon, School of Law and Criminology, Maynooth University; Dr Andrea Mulligan, Associate Professor of Law, Trinity College Dublin; Dr Laura O’Donovan, Lecturer in Law, University of Sheffield; Natasha Richardson, PhD Candidate, School of Law and Criminology, Maynooth University; Dr Elizabeth Chloe Romanis, Associate Professor in Biolaw, Durham University, UK;  Prof Fergus Ryan, Head of School of Law & Criminology, Maynooth University; Peter Thompson, Chief Executive, Human Fertilisation and Embryology Authority, UK; Dr Brian Tobin, Associate Professor in Law, School of Law, University of Galway; Dr Ilke Turkmendag, Reader in Biomedicine and Society, Newcastle Law School, Newcastle University, UK; Dr Lucy van de Wiel, King’s College London; Prof Mary Wingfield, MD FRCOG, Former Consultant National Maternity Hospital and Clinical Director of Merrion Fertility Clinic, Associate Clinical Professor, Obstetrics & Gynaecology, University College Dublin.

The organisers are very grateful to the Assisted Living and Learning (ALL Institute) and School of Law and Criminology, Maynooth University for their support in the organisation and funding for this event

You can read the workshop report at the following link

Celebrating Impact: Reflections from the STEM Passport for Inclusion Mentor Awards

Research Stream: Stories/Lived Experience

Authors: Rachel McGettrick, PhD Student, Department of Psychology & ALL Institute, and Kalyn Potter, Project Manager – Mentoring for Equality Programme, STEM Passport for Inclusion & ALL Institute.

Behind every successful student is someone who believed in them, and in the case of the STEM Passport for Inclusion, that belief comes from a growing network of dedicated mentors who are not only supporting students in STEM but reshaping what’s possible for those from underrepresented communities.

On May 21^st, 2025, STEM Passport was delighted to host the first annual Mentor Awards. This event was a celebration of both hard work and heartfelt appreciation for the incredible mentors who took part in the programme. This landmark event didn’t just recognise the generous individuals behind the programme, it also highlighted the collective impact of the STEM Passport and the growing movement toward inclusion in Science, Technology, Engineering, and Maths (STEM) across Ireland.

Led by Prof. Katriona O’Sullivan at Maynooth University (MU), and supported by stakeholders including Microsoft Ireland, Maynooth University, Research Ireland, the Department of Education and various educational and industry partners, the STEM Passport aims tackle the critical disparities in STEM education in Ireland. The project specifically supports girls from socioeconomically disadvantaged backgrounds, many of whom attend DEIS schools. To achieve this, the project works across all four provinces to provide students with the opportunity to graduate with a university-accredited STEM skills module, and to develop a mentoring relationship with professionals in industry – relationships that help them envision a future in which they belong. This work aligns with our shared commitment at the ALL Institute to ensure that access, equity, and inclusion are central to how we shape the future of education and opportunity in Ireland.

This mentoring relationship is a key component of the programme. More than 966 mentors from over 180 industry partners have taken part, all trained through the ‘Mentoring for Equality’ programme. Developed in partnership with the MU Equality, Diversity, Inclusion and Interculturalism (EDI) office and the STEM Passport team, the programme equips mentors with an understanding of systemic inequality in education. This training has helped ensure that mentors are well-equipped to engage with students in a meaningful and inclusive way, helping to create spaces that are more reflective of the diverse talent that exists in Irish classrooms.

The Mentor Awards was an evening of joy, gratitude, and reflection. The event was hosted at MongoDB, one of our industry partners and organised and led by our inspiring project manager for the mentoring in equality programme, Kalyn Potter. The event brought the STEM Passport Team, mentors, and partners together to recognise and celebrate those who go above and beyond to promote equality in STEM.

Kalyn opened the evening by introducing the project and acknowledging the hard work and heart that every mentor brings to the programme. Following a welcome by company partner lead and hosts, Ciara Griffin and Marie Ronan, Kalyn then introduced Prof. Katriona O’Sullivan. Prof. O’Sullivan reminded us that the inequality we are tackling is systemic, driven by limited access to STEM education, few visible role models, and barriers that keep talented students out of key opportunities. The STEM Passport, she explained, combines knowledge (a Level 6 university qualification), relationships (mentoring from industry), and real reward (Leaving Certificate points) to level the playing field.

Wide shot of a conference room with an audience seated and facing a stage, where Kalyn Potter is speaking and holding a microphone. Two large presentation screens display visuals behind her. — Picture credit: courtesy of the authors.

Isabel Meza, our Programme Manager, followed by highlighting the reach and impact of the project. Over 5,000 students have been reached since 2022, with many now actively considering or undertaking STEM for their future careers. In the 2024/20205 academic year alone, 445 new mentors joined, and 179 returned – a clear sign of the programme’s impact and momentum.

Moving on, the awards aspect of the evening was next. We celebrated all the mentors, while shining a spotlight on individuals who have made an outstanding contribution to the programme. We had 6 different categories of Mentor Awards. The ‘Enduring Impact Award’ was for individuals who have been engaged with the programme since its original pilot and was won by 37 different mentors from companies such as Microsoft, Optum, Accenture, and DocuSign. The ‘Changemaker Award’ was for mentors who have engaged with more than five groups of mentees and was won by two mentors from AMD and MongoDB. Two other mentors from Microsoft took home the ‘Problem Solver Award’, which represented individuals who navigated and overcame challenges during a mentoring session.

Continuing on, the ‘Trailblazer Award’, which celebrated individuals who have championed the expansion of the programme and brought in new company partners, saw three mentors from Longford County Council, Mastercard, and DocuSign winning. ‘Going the Distance Award’ was for the cohort of mentors who all chose to drive to support in-person mentoring, often driving a greater duration of time than they were mentoring. For example, one mentor’s commute for this was 1.5 hours each way. This was won by 8 different mentors. Lastly, the ‘Subbing Superhero Award’ went to the mentors that always stepped up when someone else had a last-minute emergency and had to step out of their scheduled mentoring session, which was won by two mentors from Microsoft and MongoDB.

Next, we also recognised the Company Engagement Award. This was a celebration of company representation within the mentoring for equality programme. There were different levels for companies as they recruit greater number of mentors, so this was cumulative across all years of the company’s engagement with the programme. Microsoft brought home the ‘Platinum Engagement Award’, with over 300 mentors since programme engagement. The ‘Silver Engagement Award’ was won by Accenture, with over 70 mentors since engagement. Lastly, the ‘Bronze Engagement Award’, with engagement from over 30 mentors, was won by AMD, Bank of America, DocuSign, EY, KPMG, Optum, and Sun Life. All were represented by dedicated mentors and leaders from each organisation.

The final part of the evening was an insightful panel discussion with two company leads and one of our mentors from our founding company partner, Microsoft Ireland – Sabrina Staunton (Director of Workplace Experience Tech Hub Lead, Mastercard), Mayank Tiwari (Software Engineer, Microsoft), and Paula Kelly (HR Director, Sun Life Ireland) – which Kalyn Potter moderated. This panel was a powerful mix of wisdom and lived experience, offering honest reflections on what it’s like to be a mentor, dished up with a dose of humour and inspiring entreaties that served as a reminder of the significance of the work being achieved. They shared their personal reasons for getting involved in the programme and left us with thoughtful recommendations for the future. After the event wrapped up, everyone gathered for refreshments and networking, a perfect opportunity for mentors to share their personal experiences and reflections on being part of the programme.

Left to Right: Sabrina Staunton, Paula Kelly, Mayank Tiwari, and Kalyn Potter seated in front of an audience during the panel at the Mentor Awards event. A large screen behind them displays headshots and names, and the setting includes warm lighting and a casual, modern interior. — Panel Discussion. Picture credit: courtesy of the authors.

The Mentor Awards were more than a celebration; they were a call to action. The STEM Passport for Inclusion has now facilitated over 2,500 hours of mentoring, helping students gain confidence, knowledge, and access. As we look to the future, our goal is to grow this network, deepen our impact, and continue advancing equality in STEM. The mentors we celebrated this week don’t just support students – they are reimagining what it means to belong in STEM. In addition, the mentors speak directly to the broader goals of the ALL Institute by creating inclusive pathways that empower individuals to fully participate in education and society. Because when young people are shown that someone believes in them, the possibilities are endless.

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.

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