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Wednesday, April 24, 2019 9:00 - 14:00

Ethics Half Day @ the Human Genome Meeting 2019

Towards Implementing Genomic Medicine

April 24th - 26th 2019


“Open Science: What do we need to know to protect the interests of all stakeholders: patients, researchers and clinicians?”

A workshop led by the HUGO Committee on Ethics, Law and Society (CELS) and the Human Variome Project (HVP)

Benjamin Capps (Chair, HUGO CELS), Tamra Lysaght (Vice-Chair, HUGO CELS) and Helen Merrideth Robinson (HVP)


The ethics session at the 2019 HUGO Genome Meeting will be held on the first morning – 24th. Refreshments [and lunch?] will be provided. A day registration rate is available, which in addition to the Ethics session, will include access to first days HUGO plenaries.


In a world where there is increasing will to ensure that all benefit from scientific advances, how do those working in the space of human genomics best contribute to this?

One model is Open Science: a model characterized by principles of open data sharing, fast dissemination of knowledge, and cumulative research and cooperation, which aims to accelerate innovation, streamline translation from bench to application, and reduce some of its associated costs.

The idea that data can be accessed by anyone, anywhere in the world, raises important questions for scientists. In this workshop, experts will provide an overview of the ethics, implications for global research networks and infrastructure, and legal issues.


With the collection and sharing of genomic data and information in health systems around the world predicted to increase markedly in the next five to ten years, there is a need for a broader discussion of the implications of this for patients, researchers and clinicians. Currently, the discussion appears fragmented and loosely coupled; many stakeholders, particularly those in from low and middle-income countries are absent from the discussion. This lack of diversity weakens the capacity of debates to progress. There is a need to develop a comprehensive framework for dealing with the challenges of Open Science that can address the often competing interests of a global community involved in this space


HUGO and HVP have an interest in developing the Open Science agenda; but it needs input from scientists expected to use the framework. The HVP, for instance, aims to integrate diversity through involving low and middle income countries in research – this is ideally suited to the Open Science model. The HUGO Ethics Committee has long advocated for sharing the benefits of genomic research – which includes access to research where there are limited resources to do or exclusivity.

This session aims to open/begin a longer term process that looks to:

  1. Giving greater definition to what is meant by Open Science;
  2. Identifying who are the key stakeholders globally who have an interest in this;
  3. Beginning to define a process for building a global framework that will ensure that Open Science is as ethical, diverse and equitable as possible, including a research agenda for the next few years – what we currently know and what we need to know.


08:00 ~ 09:00 HUGO Genome Meeting Registration
09:00 – 09:10 Welcome (10 min) Chair of CELS Ben Capps
09:10 – 09:20 Welcome (10 min) EWHA Institute for Biomedical Law and Ethics TBC
09:20 – 10:00
What is Open Science?
HUGO CELS Based on Montreal paper Chair: Tams
10:00 – 10:40
Why do it?
Ethics and Open Science
HUGO CELS Ruth Chadwick
Chair: Tams
10:40 – 11:00 Break (20 min)
11:00 – 11:40
Global Efforts to Expand Open Science: Benefits, and Evidencefrom the HVP HVP
Examples of disease and country groups currently doing things: Brazil, Malaysia, BRCA, Globin, INSIGHT
Chair: Ben
11:40 – 12:20
What are the challenges?
Legal Aspects
EWHA Institute for Biomedical Law and Ethics EWHA Institute for Biomedical Law and Ethics
12:40 – 13:00
Discussion HUGO, HPV and IBLE HUGO, HPV and IBLE
Chair: Ben
13:00-14:00 HUGO Genome Meeting Registration