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Genome editing: legal challenges
Legal consideration of new technologies always faces the challenge that the law can only react with a time lag. When scientists work on new methods and processes, politicians must first become aware of this work and then conclude that there is a need for legal action. As a rule, it is then examined whether the existing laws are sufficient to regulate the new technology in question, the existing law needs to be amended or a completely new framework needs to be developed. The relevant processes are therefore politically driven, predetermined by certain procedural rules and complicated by the fact that the relevant laws must strike a fair balance between the rights and interests of a wide range of stakeholders. All of this means that legislative procedures at national and European level regularly take years and sometimes even decades.
Health and healthcare in the AI Act
Health and healthcare are central to the recent AI Act adopted by the European Union. In this legislation, the classification of the various uses or applications of AI is based on the levels of associated risks in terms of health, safety and fundamental rights. The irecs team, having worked on the ethical issues of AI in health and healthcare, is delighted to see that a number of its conclusions and recommendations coincide with many key aspects of this new legislation: concerning individual health, public health, healthcare systems and biomedical research.
How the EU AI Act could guide the ethics of AI research
In the blink of an eye, artificial intelligence has gone from theoretical posturing to tools embedded into software, search engines and even healthcare systems millions use each day. Yet approaches to addressing ethical aspects of AI in research are in their infancy. AI technologies pose unforeseen and unique ethical challenges that are not yet reflected in many ethics review processes for research.
Adapting institutional research ethics and integrity governance to challenges of new and emerging technologies
iRECS at the ENRIO Conference 2023
New and emerging technologies not only permeate society but also raise challenges for research ethics and integrity. Especially recent advances in artificial intelligence, such as ChatGPT, but also progress in, for example, extended reality, genome editing and biobanking research create a need for governance schemes that help ensure research on and with such technologies is conducted responsibly. The iRECS project develops and pilot-tests an institutional governance model that combines guidance and educational elements.
Biobanking ethics and governance in China
Current practice and future perspectives
In the past 20 years, with the development of precision medicine, biobanking in China has witnessed rapid development. Biobanks are resources of human biological material and genetic information that are used for research on human health and disease.
Today, a comprehensive Chinese biobank network exists, composed of biobanks in major hospitals, research institutions and universities, third-party storage platforms run by commercial companies, and the Biobank Alliance and the National Biobank Network as the effective support for administration and regulation. The establishment of the biobank network lays a solid foundation for the development of life sciences in China.
However, considering that the demand for biobanking is expected to increase in China, there is still a lot of infrastructure that needs to be built.
MILLION DOLLAR VIALS
The greatest ethical challenge to genome editing research isn't designer babies, but economics.
Year on year, the records for the most expensive medications in the world are being broken by a new frontier in medicine — gene therapy.
It sounds like the stuff of the future: gels that deliver packages of genes into cells, one off-shots that grant years of life to patients and IV drips altering the material within our cells. Chronic, debilitating genetic diseases could be made manageable with a single vial of a gene therapy treatment. Yet, most of these treatments cost upwards of a million dollars a dose.
Now, a wave of therapies is in the pipeline. CRISPR-Cas9 technology makes gene editing easier and more efficient than ever, but what is quickly becoming the most pressing issue is patient access.
The European University Association hosted a productive leadership roundtable on research ethics, integrity, and the rapid pace of new technology
On 31 May, 26 rectors and vice-rectors from 18 European countries met online for a leadership roundtable on institutional approaches to research ethics and integrity. The meeting was hosted by the European University Association in the context of the iRECS project to gather the views of university leaders about the current challenges that they experience.
The conference coincided with the launch of Apple’s new VR headset, and the questions of its implications
The iRECS team was at the Collège de France, in the heart of the Latin Quarter in Paris, to attend a two days international conference on the philosophical analysis of Extended Reality (XR) technologies. This conference, entitled Virtual and augmented realities: epistemological and metaphysical issues, was organized by Professor Claudine Tiercelin, who holds the Chair of Metaphysics and Philosophy of Knowledge at this historic Parisian academic institution, and Assistant Professor Alexandre Declos.