Patents as Governance for Human Genome Editing, Professor Jacob S. Sherkow

1 December | 17:00-18:00 London time 

The talk will focus on ways patents and patent licensing are used (and could be used) as governance instruments for human genome editing. Professor Sherkow will provide a brief introduction to the main tool of gene editing, CRISPR/cas9 which has itself been subject to a long running patent dispute. The talk will then proceed to discuss some mechanics and concerns of the patent instrument as a governance tool.

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Webinar: Regulating the boundaries of medicine: traditional healing and the law in contemporary Senegal, Professor Emilie Cloatre, Kent Law School

24 November | 17:00-18:00pm London time

This webinar will explore the relationship between law and healing practices at the edge of medicine, focusing on the specific issue of the regulation of traditional healing in Senegal. Traditional healing has generated long-standing challenges for states around the world. Although a vast proportion of patients worldwide rely on traditional healing for their everyday care, how to organise and regulate its practice raises numerous practical and symbolic difficulties. Rather than simply highlighting the complexity of regulating a particular kind of socio-cultural practice, these difficulties also raise broader questions about healthcare regulation, the regulation (and definition) of medicine itself, and the interface between legal and biomedical institutions. Ongoing debates around the regulation of traditional healing in Senegal illustrate some of these issues and points of friction. 

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Understanding expectations as techniques of legitimation: the case of imagined futures through global bioethics standards for health research

November 10, 2021  |  17:00-18:00 GMT

Expectations or strong beliefs about what can occur can be shaped by organizations and used by them as techniques for public legitimation of their governance and regulatory activities. I advance this argument by reference to the International Council on Harmonisation of Technical Requirements for Registration of Pharmaceuticals for Human Use (ICH). The expectations and imaginary flowing from the ICH’s mission and framing, ‘harmonisation for better health’, support a focus on technological development for the production of safe, quality, and effective pharmaceuticals and individual ethical conduct to achieve it. The expectations also marginalize wider systemic issues relating to social justice, particularly those affecting the global South. The central role of scientific-technical knowledge and expertise to harmonization abets the latter by minimizing the value to governance of public knowledges on systemic issues. Instead of ensuring the contribution of these knowledges to governance through public participation, there is an attempt to bolster legitimation through communication of expectations and transparency to show practices are in accordance with them (i.e. that expectations are met).

Expectations as techniques of legitimation

This webinar will be live and interactive via Zoom.  

For registration details please contact Imogen Holbrook at imogen.holbrook@law.ox.ac.uk


Webinar: Law-by-Design and automated decision making : a reinterpretation of Art. 22 GDPR

Wednesday 2 June, 2021 from 5pm-6pm BST/UTC+1

The rule on automated decision making in the General Data Protection Regulation has been the subject of many controversies. Christian Djeffal argues that Art. 22 GDPR is to be reinterpreted as a Law-by-design norm. Instead of discussing questions like the existence of a right to privacy, this provision should be applied in a context sensitive manner in order to fulfill its central function to safeguard rights freedoms and legitimate interests of data subjects. He discusses the implication of this view for current legislative proposals like the EU Artificial Intelligence Act. This webinar will be recorded.

Guest speaker: Professor Christian Djeffal, Technical University of Munich. 


4th ELSI Congress | Genomics and Socity: Expanding the ELSI Universe | The Jackson Laboratory for Genomic Medicine

5-7 June 2017

The 4th ELSI Congress was the latest in a series of major conferences for researchers and others interested in the ethical, legal and social implications (ELSI) of genomic research. Videos of Plenary Presentations are avaliable at the Congress website, together with abstracts and a large number of slide decks.


Patient and interest organization's views on personalised medicine (2017)


ELSI2.0 webinar (March 2017)


ELSI2.0 Making Connections teleconference


Building a national Genome Centre: citizen and policy perspectives


Ethics and Governance of Genome Sequencing in Indigenous Australian Populations (May 2017)

Watch the webinar here.


Personalised Medicine: Challenges for health data governance

Watch the webinar here.


ELSI2.0 and EUCelLEX Project Satellite Symposium at the International Association of Bioethics | Edinburgh

14 June 2016

ELSI 2.0 and EUCelLEX teamed up to host a joint Symposium 'Exploring International Policy Development in Regenerative Medicine' alongside the 13th World Congress of Bioethics. Highlights included a Panel session considering 'Socio-Ethical and Legal (ELSI) Implications of Genome Editing Technologies', Chaired by Dr Sarah Chan, Usher Institute for Population Health Sciences and Informatics, University of Edinburgh.

Panellists:

  • Associate Professor Ainsley Newson, University of Sydney, Australia
  • Professor Kazuto Kato, Osaka University, Japan
  • Associate Professor Rosario Isasi, Department of Human Genetics, University of Miami, USA
  • Dr Paul De Sousa, Centre for Clinical Brain Sciences, University of Edinburgh

A second Panel comprising Stem Cell Research Scientists together with Ethicists also stimulated a lively debate.

Available meeting documents:


Sharing science, sharing values: The challenge of diversity | Toulouse

03 December 2015

ELSI2.0 joined forces with the French Society of Human genetics to host this colloquium, addressing the values at stake in technological developments in genomics and their applications to the health sector, in the international context. The event celebrated 18 years of research in the group on Genomics and public health at Inserm and University Toulouse III Paul Sabatier joint Unit 1027, and marked an end of an era and the launch of a new venture as Anne Cambon-Thomsen adopted emeritus status and handed over leadership of the team to her distinguished colleague Emmanuelle Rial-Sebbag.

Available meeting documents:


Inaugural ELSI2.0 International Conference | Oxford

23-25 June 2015

ELSI2.0 joined forces with the HeLEX Centre at the University of Oxford to host this interactive and stimulating conference exploring the broad theme of Translation in Healthcare. The event celebrated 5 years of research at HeLEX, and hosted the official launch of the ELSI2.0 Workspace. A friendly and supportive atmosphere sparked numerous new collaborations, and delegates continued to work together following the conference to prepare publications for a special issue of BMC Medical Ethics. Click here to view their outputs!

Available meeting documents:


COST Action 'Chip Me' Early Stage Researchers Workshop | Oxford

17-21 November 2014

In November 2014 a group of 12 Early Career Researchers from across Europe gathered in Oxford for a 1 week interactive workshop focused on developing an interactive online workspace to facilitate collaboration and support career development. The ELSI 2.0 workspace has been designed to provide to provide key elements of the platform they have designed.

Available meeting documents:


Brocher Workshop

02-05 June 2014

This meeting was hosted and supported by the Brocher Foundation, and received further funding from the Wellcome Trust. The aim of the workshop was to explore some of the challenges that face the current governance frameworks of international research consortia when sharing data globally. It brought together experts from Europe, the America's, Asia, Australasia and Africa who have been working in this field to prepare a publication to identify key issues, discuss lessons learned from international, interdisciplinary and multi-sector collaborations, compile recommended considerations for best practice and initiate a debate. A paper is in preparation to report the outcomes of this meeting and will be posted here once accepted for publication.

Available meeting documents:


Brocher Workshop

19-21 November 2013

This meeting was hosted and supported by the Brocher Foundation, and received further funding from the Wellcome Trust. The main goal of the workshop was to open a dialogue and assess the possibilities for international harmonization of decisions surrounding the return of genetic results, obtained during the course of research involving biobanking, to research participants. Participants from Europe, the America's, Asia, Australasia and Africa identified and discussed pragmatic, policy and theoretical concerns, and presented a range of arguments in support and in opposition to research policies that permit or encourage return of results emanating from genomic research. A journal symposium issue is in preparation that will include a group paper and multiple individual papers, together with web-based resources.

Available meeting documents:


P3G/CGP/ELSI 2.0 Collaboratory Workshop | Montreal 

3-4 September 2013

An international workshop: Towards an International Ethics 'Safe Harbour': Testing the Accelerator. The objective of this workshop was to further develop the ELSI2.0 platform for international collaboration in ELSI research and gathered 23 participants from more than 7 countries.


The ELSI 2.0 Collaboratory workshop | Rotterdam

26 June 2012

The objective of this workshop was to develop a new platform for international collaboration in research on the ELSI of genomics and genetics. The workshop gathered 62 registrants from 26 countries, with a further 38 joining via a website discussion board.


Glocal ELSI - A Research Strategy for Genomics | Geneva

November 2011

This meeting was the birthplace of ELSI2.0, leading first to a vision paper and later to the Science Magazine publication that introduced the concept of ELSI2.0.

Available documents

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