A European network called ‘Citizen’s health through public-private Initiatives, Public health, Market and Ethical perspectives’ will hold its final European conference in Galway under the leadership of NUI Galway lecturer, Dr Heike Felzmann from the Centre for Bioethical Research and Analysis.

Taking place at NUI Galway, the conference will focus on emerging developments in genetic testing and research in the context of healthcare and health research across Europe. It will discuss the impact of recent innovations in the field of genomics and emerging ethical, legal and social challenges with regard to the increasing availability of genomic information and novel forms of intervention. Core themes to be discussed will include:

  • How could genetic information be shared across Europe to increase knowledge and improve public health while respecting research participants’ wishes about the use of their information?
  • What roles and responsibilities should be fulfilled by commercial, citizen-driven and public providers of genetic testing, and how much power should patients and citizens have with regard to the use of their genetic information?
  • How can all affected stakeholders be involved in decision-making in a meaningful way, so that scientific and service developments in the field occur in a socially responsible manner?
  • How should society respond to the possibilities of targeted human intervention into our genome brought about by new gene editing technologies?

The network called COST (Cooperation in Science and Technology) is the longest-running European framework supporting trans-national cooperation among researchers, engineers and scholars across Europe. Based on a European intergovernmental framework for cooperation in science and technology, the framework has been contributing – since its creation in 1971 – to closing the gap between science, policy makers and society throughout Europe and beyond.

The conference will feature guest speaker, Pascal Borry, Associate Professor of Bioethics at the Centre for Biomedical Ethics and Law at the University of Leuven in Belgium, whose main research activities are concentrated on the ethical, legal and social implications of genetic and genomics. Professor Borry has published on topics such as direct to consumer genetic testing, public health genomics, biobanking, research on human tissue, genetic testing, preconceptional screening and neonatal screening.

Dr Oliver Feeney from NUI Galway and Co-Chair of one of the working groups of the project, said: “European-wide importance of the research network is evidenced by the fact that it has successfully brought together cutting-edge multidisciplinary expertise from 26 European countries while creating a distinctly European perspective and international model for continued developments in health and research into the future.”

With this mission in mind, the network has focused on bringing together a multidisciplinary team of experts whose focus has been on coordinating research and providing guidance on ethical, legal and social issues with regard to rapidly evolving developments in genetic testing and research that include:

  • Consent and return of results, and new genomic technologies in clinical practice and biobanking.
  • Public health and private sector involvement in genomics from patient-centred research initiatives to consumer genomics companies.
  • Data-sharing and the potential of information technology developments with regard to genomic information.
  • Participatory and public engagement in genetics, science and research.
  • Gene editing: new ethical, legal and regulatory challenges

The conference is free and open to the public, and will take place in the Aula Maxima at NUI Galway from the 4-6 September.

To register and for further conference details, visit: http://www.bit.ly/2wCFr54

For more information about CHIPME, visit: www.chipme.eu

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