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Welcome to the Science Summit at UNGA76, a major contribution to advancing Science for the UN SDGs. Online from 14- September - 5 October 2021.
ISC will organise the second edition of the UNGA76 Science Summit around the 76th United Nations General Assembly (SSUNGA76) in September 2021. The objective of the virtual meeting will be to raise awareness of the role and contribution of science to the attainment of the United Nations Sustainable Development Goals. It will demonstrate initiatives that provide models for global science mechanisms and activities in support of the SDGs, particularly in science infrastructure and capacity building. Science is and will enable sustainable economic, environmental, and societal development. Science is more than a funding prioritisation exercise: science is impacting all areas of policy-making and is playing a more critical role in how policy objectives are achieved and the consequent benefit to people everywhere, including responses to global challenges.
Engagement with policy leadership is more important than ever: UNGA76 is a unique forum for science to demonstrate how policy and political leadership can benefit from innovation. Central to this is the role of nonstate actors and the multilateral fora, which increasingly determine how priorities are set. Science needs to be part of this dialogue and inform outputs through thought leadership, evidence, insights, analysis, and innovation.

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Tuesday, September 28 • 10:00am - 12:30pm
(REF DP28) How will regulation for data, biotechnology, health and the digital economy help innovation for achieving the SDGs

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10h00 Rita Lawlor Biobank Director, ARC-Net
10h15 Declan Kirrane Chair, Science Summit United Nations General Assembly 76 (SSUNGA76)
10h20 Kenneth Fleming Chairman, The Lancet Commission on Diagnostics,
10h35 Antonella Cardone Director of the European Cancer Patient Coalition (ECPC), Belgium
10h50 Giske Ursin Director of the Cancer Registry of Norway
11h00 Andrew Biankin Executive Director, International Cancer Genome Consortium, UK
11h10 Jean-Claude Burgelman Professor of Open Science Policies and Practices, Free University of Brussels
11h20 Lydia Kline Team Lead, Clinical Research Policy in the National Institutes of Health’s Office of Science Policy (OSP), USA
11h30 David Peloquin Partner, Ropes and Grey, USA
11h40 Kato Kazuto Osaka Universit, Japan
11h50 Brendan Burns Brendan Barnes, EFPIA, Director IP & Data Protection, EFPIA, 

This session will consider how regulations in data protection, medical devices and in-vitro diagnostics influence cooperation in medical science and health research to support the SDGs.

The session will initially focus on the European General Data Protection Regulation and its influence on the global stage. Given that its scope already extends beyond the borders of the European Union, it is arguably becoming the template for global legislation.

Therefore, the session is designed to impart up-to-date information on the European Union's GDPR; to look specifically at related research collaboration between South Africa and African and the European Union and the impact of the GDPR on those research activities, in particular in the area of health. The meeting will also raise awareness of the emergence globally of data protection regulations and related future developments in South Africa and more generally in the continent of Africa.

The GDPR also addresses the transfer of personal data outside the EU, including to African nations and developing nations more generally. The GDPR aims to give control to individuals over their personal data, to ensure the free flow of personal data between the Member States and to simplify the regulatory environment for international business by unifying the regulation within the EU.

Because research involving human health, drug safety and clinical trials requires the processing of personal data, the GDPR has posed particular challenges to the research sector both within the EU and elsewhere.
As the “Africa Initiative” is an integral part of the first Work Programme for 2021-2022 of the recently adopted “Horizon Europe”, it is important to consider how African Nations address should compliance and prepare for future data protection regulations in Africa.

The discussion will also consider the wider impact of how regulation can advance are otherwise innovation. It will look at The session will maintain a focus on the GDPR, but will look at this in the wider geographic context and in relation to other regulations including in-vitro diagnostics, medical devices and so forth. We also plan to visit the issue of biotechnology-related regulation and digital market regulations and the connection between them.

While conscious of the need to avoid a European bias in this discussion, it will be perhaps useful to look at the plans for the EU digital decade up to 2030, which coincides with the United Nations Agenda 2030 and of course the SDGs. Some of the issues to the fore, include:
  • A digitally skilled population and highly skilled digital professionals;
  • Secure and sustainable digital infrastructures;
  • Digital transformation of businesses;
  • Digitisation of public services.

These priorities are also reflected in the United Nations roadmap for digital cooperation which prioritises the following five sets of recommendations on how the international community could work together to optimize the use of digital technologies and mitigate the risks:
  • Build an inclusive digital economy and society;
  • Develop human and institutional capacity;
  • Protect human rights and human agency;
  • Promote digital trust, security and stability;
  • Foster global digital cooperation.
While the UN has put forward some very thorough recommendations, the UN cannot regulate. This is the preserve of nation-states. The meeting will look at how this fragmented and heterogeneous regulatory environment impacts the attainment of the SDGs.
The meeting will bring together policy and research leadership from around the world. The objective will be to create a much-needed forum for discussion on the broader implications of this regulation on transatlantic science cooperation, at a time when the regulation is arguably becoming a template for similar legislation globally.


Brendan Barnes

Director IP & Data Protection, EFPIA
Brendan Barnes joined EFPIA in 2002 to work on the alignment of national laws in new member states during the enlargement of 2004. Subsequently, he has been involved in EFPIA’s work on multilateral trade and intellectual property issues, including the EU’s legislation on product... Read More →
avatar for David Peloquin

David Peloquin

Partner, Ropes and Grey
David Peloquin is a partner in the health care group who advises clients on a wide range of legal and regulatory issues in the area of clinical research and related activities. David counsels academic medical centers, life sciences companies, information technology companies and other... Read More →
avatar for Lydia Kline

Lydia Kline

Team Lead, Clinical Research Policy, NIH
Lydia Kline, MPH, MS, serves as Team Lead, Clinical Research Policy in the National Institutes of Health’s Office of Science Policy (OSP), where she oversees a portfolio that includes regulatory and policy issues related to research involving human subjects. Since 2018, she has... Read More →
avatar for Kenneth Fleming

Kenneth Fleming

Chairman, The Lancet Commission on Diagnostics
Dr Fleming has been an academic pathologist for over 40 years. His research interests include the pathogenesis of Primary Sclerosing Cholangitis, and the molecular analysis of tissue. He has over 200 publications and a H-index of 49.Dr Fleming has had several major leadership positions... Read More →
avatar for Kazuto Kato

Kazuto Kato

Kazuto Kato, PhD, is a professor of biomedical ethics and public policy at the Graduate School of Medicine, Osaka University. Dr Kato has a PhD degree in developmental biology from Kyoto University. After finishing postdoctoral research at the University of Cambridge with Sir John... Read More →
avatar for Jean-Claude Burgelman

Jean-Claude Burgelman

Professor of Open Science Policies and Practices, Free University of Brussels, Editor in Chief, Frontiers Policy Lab
Jean-Claude Burgelman is professor of Open Science Policies and Practices at the Free University of Brussels; Faculty of Social Science and Solvay Business School. He retired on 1-3-2020 from the European Commission as Open Access Envoy and head of unit Open Science at DG RTD. He... Read More →
avatar for Andrew V. Biankin

Andrew V. Biankin

University of Glasgow
Andrew V. BiankinB.Med.Sc., M.B.,B.S.(HONS), F.R.A.C.S., F.F.S.(R.C.P.A.), F.R.C.S.(Glasg), F.R.C.S.(Edin), Ph.D., F.R.S.E., F.Med.Sci.Regius Chair of Surgery,Director, Wolfson Wohl Cancer Research Centre,University of GlasgowChairman, Precision-Panc Therapeutic Development PlatformExecutive... Read More →
avatar for Declan Kirrane

Declan Kirrane

Chair Science Summit UNGA77, ISC
Declan Kirrane is the Founder and Managing Director of ISC Intelligence in Science, the chairman and managing director of the science Summit at the United Nations General assembly, and co-founder of Medicines for Future (MAF). He has over 25 years of experience as a global senior... Read More →
avatar for Rita Lawlor

Rita Lawlor

Biobank Director, ARC-Net, University of Verona
Rita T. Lawlor is associate professor in the Department of Diagnostics and Public Health and a fellow of Information Privacy from IAPP (International Association of Privacy Professionals). Rita is originally a Computer Science graduate with a doctorate in translational biomedical... Read More →
avatar for Antonella Cardone

Antonella Cardone

Director, European Cancer Patient Coalition (ECPC)
Antonella Cardone is the Director of the European Cancer Patient Coalition (ECPC), which is the largest cancer patient umbrella organization in Europe with over 450 members from 48 countries. She has 25 years of experience working for non-profits in health, social and employment sectors... Read More →
avatar for Giske Ursin

Giske Ursin

Director, Cancer Registry of Norway
Giske Ursin, MD, PhD is the director of the Cancer Registry of Norway.  She is also Professor II at the Department of Basic Medical Sciences at the University of Oslo, and Professor Emerita at the Department of Preventive Medicine, University of Southern California, USA. Dr. Ursin’s... Read More →

Tuesday September 28, 2021 10:00am - 12:30pm CEST