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NISO Plus 2021
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Privacy: global perspectives

Abstract
Thinking with GDPR (Andrew Cormack)

Europe's General Data Protection Regulation (GDPR) is sometimes portrayed as a complicated obstruction to doing what we want. This talk will look at the law behind the slogans: finding a rich source of guidance on how to develop the effective, privacy-respecting services that our customers and users - not just in Europe - need and expect. We'll look at the principles of Accountability, Necessity, Purpose Limitation and Information, and show how these help us design services that work better for users and providers. Specific examples will be taken from access management and data analytics.
mHealth Wearables and Apps: A changing privacy landscape (Christine Suver)
The use of wearables and smartphone apps to collect health-related data (mHealth) is a growing field. Wearable and health apps can continuously monitor our physical activity, sleep, heart rate, glucose levels, etc. They provide a rich data set that can supplement the data from occasional doctor's visit. But what are the privacy considerations of mHealth? We will explore global privacy principles, discuss the tension between anonymity and data utility, and propose ways to improve privacy notices/policies.


A look at China’s draft Personal Information Protection Law (Judy Bai)

With measures to ensure privacy getting prioritized worldwide, many countries have framed relevant laws and regulations on personal information protection. On October 21, 2020, China released its draft Personal Information Protection Law (PIPL) for public consultation.
When the draft PIPL gets passed, it’ll be China’s central and universal governing law on protecting personal information. While no definitive timeline has been set for the final law, we discuss some of the key features of this important piece of draft legislation and how businesses (based in China and those engaged in commercial interactions with people living in China) should prepare ahead to ensure data privacy compliance.

NISO Plus 2021

90

Global

February 22-25, 2021

NISO Plus 2021 was our first virtual conference, held in February of 2021. A global undertaking, NISO Plus 2021 had over 800 participants from 26 countries come together to have a conversation about the state of the information ecosystem. Here you'll find both the presentations and discussions from that event.

Andrew Cormack

1

Chief Regulatory Adviser - Jisc

Andrew Cormack has worked for the UK's national research and education network for more than twenty years. He joined as Head of the Computer Emergency Response Team, but for the past fifteen years has focussed on policy and regulatory issues. His role has expanded from networks to technical services such as federated authentication and, more recently, services based on data. Throughout, his aim has been to make law and technology work together, rather than in opposition.

To support this, he has added batchelor's and master's degrees in law to his original mathematics degree. He is a regular speaker at national and international conference, and writes in all formats from blogs to peer-reviewed papers. He chaired the programme committees for the 2009 TERENA Networking Conference and 2019 FIRST Security and Incident Response Conference. In 2015 he was awarded the Vietsch Foundation Medal for his role in advancing trust and security within the European research and education sector.

ORCID https://orcid.org/0000-0002-8448-2881

Christine Suver

1

Director Research Governance and Ethics - Sage Bionetworks

I lead the Research Governance and Ethics group at Sage Bionetworks. The group develops and pilots data sharing models and tools to enable open research collaborations.
In my work, I help research participants and researchers determine the appropriate governance approach to contribute, collect, access, and share research data responsibly.
It starts with research participants. I design eConsent experiences to better inform participants about the risks and benefits of participating in research. I explain the real-world implication of big data analysis, comprehensive data linkage, and the impact on their privacy. I am particularly interested in developing new eConsent to support the autonomous decision of populations with a wide range of memory and cognitive ability.
I also help researchers determine the governance conditions that enable them to work collaboratively and comply with ethical and regulatory requirements. I co-chair the Governance Working Group of the (exceptional) National COVID Cohort Collaborative initiative (N3C), to enable dozens of institutions to responsibly share clinical data for urgent COVID-related research.

Christopher Chan

3

Deputy University Librarian - Hong Kong Baptist University

I worked in Information Services at HKBU Library for over 12 years. Prior to that, I was a school librarian at two international schools in Hong Kong.

In February 2021 I was appointed Deputy University Librarian. In this role I provide leadership and management for all of the Library's services and operations.

Judy Bai

1

Director of Business Development - Digital Science

Judy Bai is an expert in scholarly communications as well as research workflow tools and data in China. She is currently Director of Business Development, China for Digital Science, where she is responsible for shaping the company’s Greater China strategy and delivering its products, services and thought leadership to customers and partners there.

Judy has 15 years’ experience in scholarly publishing spanning various aspects of the industry. Before joining Digital Science, she headed the society publishing program for China in Nature Publishing Group and Springer Nature. There she played a key role in expanding the Nature Partner Journal program, developing partnerships with a wide range of leading Chinese universities and institutes. Prior to that, she spent seven years at Elsevier’s Beijing Office in various publishing related roles. She is based in Shanghai.