Shenzhen, China
Saturday, 1 June 2019
organised by the
BGI & China National Genome Bank (CNGB)
in cooperation with
Good Clinical Practice Alliance – Europe (GCPA)
Strategic Initiative for Developing Capacity in Ethical Review (SIDCER)
A Preliminary Workshop in the Framework of the 6th World Conference on Research Integrity (WCRI); 2-5 June 2019; Hong Kong, China
This International Workshop on Research Integrity in Human Tissues and Genomics is designed within the 6th World Congress on Research Integrity to identify ethical and privacy issues arising in the context of research on human tissues and genomics and how these can be addressed through research integrity guidances, training, and promotion. The workshop explores the challenges to creating population-based & national tissues banks for health and genomics research.
The workshop develops out of the BGI & CNGB extensive experience in the development of tissue and genomics biobanks and databases, the GCPA-SIDCER experience with implementing ethics in innovative research with the Forum for Ethics Committees in Asia & the Western Pacific (FERCAP) and the European Fellowship in Research Ethics (EFRE).
The workshop examines the framework for research integrity in China and Europe, specifically within the BGI/CNGB in response to ethical issues involved in the collection and use of human tissues for health and genomics research. The workshop contextualises discussion in the framework of Chinese and international guidances, including the ALLEA ‘European Code of Conduct for Research Integrity’ (2nd edition), Responsible Innovation, Public Ethics, as discussed in EFRE workshops with the European Commission and the European & Developing Countries Clinical Trials Partnership (EDCTP).
The primary objective of the workshop is to provide a comprehensive and in-depth examination of the role of research integrity in biobanking as well as in human tissues and genomics research. The workshop creates an international platform for the sharing and exchange of standards, guidances, and best practices in research integrity in these specific areas. At the same time, it highlights the ethical challenges involved in biobanking as well as human tissue and genomics research, indicating areas open for further regulation and guidance as well as areas needing to be addressed specifically by research conduct codes, training, and implementation.
The workshop addresses the following questions:
- What are the challenges and pathways to the sharing of human tissues and genetic materials / data for health-related research?
- What are the roles of personal integrity, institutional integrity, and data integrity health-related research that utilises human tissues and genetic materials / data?
- Who is served by sharing human tissues and genetic materials / data in the context of scientific research?
- What are the responsibilities of researchers and their institutions when using or sharing human tissues and genetic materials / data for health-related research?
- In what ways does sharing human tissues and genetic materials / data promote research integrity?
The workshop brings together Chinese and international experts in biobanking, genomics research, and ethics. It is open by application to Chinese research and ethics experts, WCRI participants, international experts, and EFRE Fellows. It is similarly open to junior researchers in helping to build and share capacity for research integrity related to biobanks and genomics research.
In person Join: Jinsha Road, Dapeng New District, Shenzhen China
Online Join: To join the Zoom Meeting click on https://zoom.us/j/634563007
Recommended: We recommend that the online participant install the Zoom software on his/her computer for best functionality, but it is not necessary. The participant can also connect directly through the browser (though the connection may not work as well).
The Meeting ID is 634 563 007. This ID, however, should not be needed. If the participant want to join on mobile by dialing in, the local number is here: https://zoom.us/u/acoDs3jgzn.
This meeting access is offered in the spirit of “open science, open ethics”. People are free to join and leave the workshop through Zoom as they wish. If participants want to register their attendance in advance, they can e-mail Hui Kang at kanghui@genomics.cn and Francis Crawley at fpc@gcpalliance.org.
Further information on the workshop can be found here: https://gcpalliance.org/events/
There is now a high speed train connection between Hong Kong and Shenzhen (between 14 and 19 minutes travel time). See https://www.travelchinaguide.com/china-trains/high-speed/hongkong-shenzhen.htm
There is something called a ‘Shenzhen visa’ that you can receive at the point of departure in Hong Kong. This allows five days of entry and is available to citizens of just over 50 countries. See https://www.travelchinaguide.com/cityguides/guangdong/shenzhen/visa-on-arrival.htm
If you need a Chinese visa, we can have an invitation letter prepared for you.
Travel in total from Hong Kong University to BGI/CNGB in Shenzhen is about 3 hours, so those coming from Hong Kong should probably arrive in Shenzhen on Friday, 31 May. BGI/CNGB has limited housing they can provide for the evening and possibly for Saturday to Sunday evening. A bus will be provided on Saturday, 1 June, following the workshop, for travel to the Customs Station at the Shenzhen train station. A guide will accompany you.
Saturday, 1 June, 2019 Workshop Venue: Room 501, CNGB, Jinsha Road, Dapeng New District Shenzhen, China
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Time | Topic | Speaker/Chairman | Organization | |
09:00– 09:30 | Opening | Huanming Yang | BGI | |
Ren Wang | CNGB | |||
Francis P. Crawley | GCPA, SIDCER | |||
09:30– 09:55 | The Integrity of the Human Genome and the Dignity of the Human Person | Kris Dierickx | Centre for biomedical ethics and law, Faculty of Medicine, University of Leuven | |
09:55– 10:20 | Policy, Governance, and Accountability in the Context of Human Data and Genomics Research: A View from Europe | Francis P. Crawley | GCPA, SIDCER | |
10:20– 10:55 | Translation of ALLEA Code of Conduct for Research Integrity: A Comparative Perspectives | Kang Hui | The Institutional Review Board on Bioethics and Biosafety of BGI | |
10:55– 11:05 | Tea & Coffee Break | |||
11:05– 11:50 | Discussion | Fred Dubee | Senior Advisor Board of BGI | |
12:00– 13:30 | Lunch Break | |||
13:30– 13:55 | Building a National Biobank: Ethical Concerns at the Onset and the Role of Research Conduct | Abdllah Adlan A. Adlan | Biomedical Ethics Section; King Abdullah International Medical Research Center (KAIMRC) | |
13:55– 14:20 | Experiences in Transparency, Reproducibility and Fraud from A Journal and Data Repository Spanning the Hong Kong and Mainland Border | S.C. Edmunds | Giga Science | |
14:20– 14:55 | TBD | |||
14:55– 15:45 | Discussion | Francis P. Crawley | GCPA, SIDCER | |
15:45– 16:00 | Closing | |||
16:00– 16:45 | Break / CNGB Tour |
Name | Organization |
Kris Dierickx | Centre for Biomedical Ethics and Law Faculty of Medicine, University of Leuven (KUL) |
Abdllah Adlan A. Adlan | Biomedical Ethics Section; King Abdullah International Medical Research Center (KAIMRC) Assistant Professor in Bioethics, King Saud Bin Abdulaziz University for Health Science |
Francis P. Crawley | Executive Director, Good Clinical Practice Alliance – Europe (GCPA) Strategic Initiative for Developing Capacity in Ethical Review (SIDCER) |
Kang Hui | China National Gene Bank |
Chih-hsing Ho | Researcher, Sinica Taiwan |
Hongxia Zhang | Shanghai Clinical Research Center |