Panel On The Right To Scientific Progress And Freedom For Scientific Research

Scientists, national and United Nations representatives, academia and civil society this week explored and elaborated on the right to enjoy scientific progress and the freedom which is indispensable for scientific research. The right was placed in the context of today’s global challenges and scientists presented the latest examples of their research, in which human rights related to freedom of scientific research could be applied. The panel set out promote systematic dialogue to foster an understanding of the right and of what is being advanced.

The World Congress for Freedom of Scientific Research, a forum to foster dialogue between scientists and politicians, and the Associazione Luca Coscioni held the panel, chaired by the association’s representative Marco Cappato at the United Nations in Geneva.

The opening remarks were given by Senator Benedetto Della Vedova, undersecretary for foreign affairs of Italy. The senator marked the 50-year anniversary of the International Covenant on Economic, Social and Cultural Rights (ICESCR) and called upon states to ensure the fulfilment of the rights under Article 27 of the Universal Declaration of Human Rights and Article 15 of the ICESCR.

Della Vedova called for reflections on whether a revolution in the law is required to address societal and global issues and on the roles of the World Health Organization, World Intellectual Property Organization, World Trade Organization and the UN Educational, Scientific and Cultural Organisation (UNESCO).

Bobir Tukhtabayev from UNESCO said the world needs more and better sciences, which also promote universal human values. Tukhtabayev described the role and activities of UNESCO and how the right to enjoy scientific progress relates to other human rights. In his view, the right has been neglected and there continues to be a lack of clarity as to what it entails.

According to Tukhtabayev, a key aspect of ongoing comprehensive discussions is the equality of access and benefit sharing of scientific progress, as this is both an ethical and scientific issue and more fundamentally a question of social justice.

UN Treaty Body Expert and Vice Chair of the Cultural, Economic and Social Rights Committee Mikel Mancisidor discussed the existence of a human right to science and its normative content. Mancisidor pointed out that often states do not report on this right, nor provide guidelines or recommendations as to its nature and implementation. If the right were better known, promoted and protected, it would have an important impact on people’s wellbeing and on the realisation of other human rights, he suggested.

Professor Cesare Romano of the International Human Rights Clinic at Loyola Law School in Los Angeles offered his experiences on how to bring claims before certain fora. Romano outlined strategic litigation and general advocacy for the right to scientific research and the problems that arise in their processes.

Romano highlighted that civil society could participate and present information on activities undertaken by states to realise the rights under Article 15, in the universal periodic review for example, and that opportunities existed on the regional level too.

“In sum, there is a huge range of possibilities and places where progress can be made,” but at present there is a limited number of actors who know how to use these processes in an effective way concluded Romano, who also bid for more common knowledge.

In the second panel on “Stem Cell Research and genome editing – political decisions and patients rights,” Marco Gentili gave a speech calling for a partnership between science and policy to be made, especially on disabling diseases. Gentili himself has Amyotrophic lateral sclerosis (ALS), also known as motor neurone disease, and described the impact of the disease on those carrying it and on their families, and the cost of personal time and resource invested. In his view, only science could do away with this cost.

Arguing that politics do not grasp the extent nor the impact of diseases on people’s lives and that the Luca Coscioni Association is trying to fill gaps in society and raise awareness, Gentili, further put forward that politicians should be trained to train the public at large.

Gentili drew a parallel between science and democracy, and said that whilst science is not the only instrument of knowledge, it is the only one we have like democracy, as it shares the value of freedom. Those who are affected by the disease, have the right to make a choice urged Gentili.

Following up on this, Chair Marisa Jaconi from the University of Geneva underscored that this session should not only illustrate the concrete effects of diseases and scientific research, but also give voice to science and scientists to talk to the public and politicians to explain what is needed.

In turn, Malin Parmar from Lund University in Sweden presented her work on the use of human embryonic stem cell research and the opportunities of genome editing. Key advances in her stem cell research include treatments for retinal disorders and neurodegenerative disease like Parkinson’s, which does not only affect the elderly. Parmer emphasised the potential of stem cells for overall better and safer cells for humans in the future.

Coupled with Parmer on presenting treatments to diseases, Marco Traub, director of the Transeuropean Stem Cell Therapy Society in Bern, extended the scope of his presentation to the wider implications of diseases. Research is often patient-centric, explained Traub, but now there is a paradigm shift to look to society as a whole. Advancements are needed in technology and stem cell research for both prevention, diagnosis and treatments, he urged.

Traub said that the problem is that “the most money in the health care system is spent through the pharmaceutical industry.”

He said “pharmaceutical companies which have so much cash asset can also support, not only in terms of taking money from the patient for drugs, but also to give something back to the whole society by spending money to make sure that hospital personnel is paid in the right way and that they are not suffering depression,” for example.

“We need to have a paradigm change,” he said, “so the pharma industry, clearly has to be seen, not as a cost factor, they have to come into the game also as somebody which delivers something to society.”

Alexandra Nightingale is a researcher at Intellectual Property Watch. She completed her Bachelors in Law at the University of Sussex and holds an LLM degree in International Law from the School of Oriental and African Studies in London. During her Masters, she developed a strong interest in Intellectual Property, particularly patents and the aspects relating to global health. Her research interests now also include geographical indications and trademarks.

Image Credits: Alexandra Nightingale