Irena Vipavc Brar ( Social Sciences Data Archives / CESSDA)
Aimed at researchers in social sciences, but of interest for other fields as well, Irena Vipavc Brar gives an overview of the most important legal and ethical considerations when sharing research data. She discusses the implications of GDPR for scientific research, informed consent and ethical aspects of dealing with personal data, and legal issues.
Links: https://www.cessda.eu/Research-Infrastructure/Training/Expert-Tour-Guide-on-Data-Management
THEORETICAL/CONCEPTUALFRAMEWORK
FRAMEWORK
- defined by the dictionary, is a skeletal or structural framework.
THEORETICAL
- means relating to or having the characteristics of theory.
THEORETICAL FRAMEWORK
- refers to the “set of interrelated constructs (concepts), definitions and propositions that presents a systematic view of phenomena by specifying relations among variables”.
KERLINGER THEORY (1973)
Theoretical framework indicates all the constructs (concepts), definitions and propositions that relate to a research problem.
A conceptual framework is an analytical tool with several variations and contexts. It is used to make conceptual distinctions and organize ideas.
THREE (3) STYLES
STYLE NO. 1
Theoretical framework is presented in the first or introductory chapter (JOURNALISTIC STYLE).
STYLE NO. 2
It is another style and popularly found in other theses and dissertations.
STYLE NO. 3
The third style of presenting the theoretical framework is that which introduces it at about the end of chapter 2.
These slides explore the reforms to the UK General Data Protection Regulation (GDPR) proposed by the UK Government in Data: A New Direction. It is argued that they are both significant and unbalanced against the data subject but (aside potentially from the e-privacy rules) not generally radical. The great bulk of the proposed substantive changes to data protection could plausibly be justified under the derogation clauses available to EU Member States within the GDPR itself. Reforms to the integrity duties of controllers and others are more far-reaching. Nevertheless, their broad structure remains compatible with even the revised version of the Council of Europe framework, Data Protection Convention 108+, which both the EU and UK remain strongly committed to. Finally, the proposals to shift ICO supervision de jure away from a priority focus on individual data subject rights and complaints are difficult to square even with Convention 108+. Nevertheless, de facto the ICO far from acts as a legal champion for the data subject today. Indeed, despite receiving over 36,000 complaints from individuals during 2020-21, it issued just three fines under the GDPR (all concerning data security breaches) and just one injunctive enforcement notice.
What is an Information Society
Why are Information Policies needed
What is an Information Policy
Elements of Information Policy
Who has Information Policies
E-Inclusion
Life Long Learning
E-Business strategies
Infrasture – physical (broadband/e-fibre)
Infrastructure – political / Legal and regulatory
Copyright, Intellectual Property, Data Protection, Freedom of Information
Regulation of Domain Name Spaces ( .ie)
E-government
Information Policy in Ireland
THEORETICAL/CONCEPTUALFRAMEWORK
FRAMEWORK
- defined by the dictionary, is a skeletal or structural framework.
THEORETICAL
- means relating to or having the characteristics of theory.
THEORETICAL FRAMEWORK
- refers to the “set of interrelated constructs (concepts), definitions and propositions that presents a systematic view of phenomena by specifying relations among variables”.
KERLINGER THEORY (1973)
Theoretical framework indicates all the constructs (concepts), definitions and propositions that relate to a research problem.
A conceptual framework is an analytical tool with several variations and contexts. It is used to make conceptual distinctions and organize ideas.
THREE (3) STYLES
STYLE NO. 1
Theoretical framework is presented in the first or introductory chapter (JOURNALISTIC STYLE).
STYLE NO. 2
It is another style and popularly found in other theses and dissertations.
STYLE NO. 3
The third style of presenting the theoretical framework is that which introduces it at about the end of chapter 2.
These slides explore the reforms to the UK General Data Protection Regulation (GDPR) proposed by the UK Government in Data: A New Direction. It is argued that they are both significant and unbalanced against the data subject but (aside potentially from the e-privacy rules) not generally radical. The great bulk of the proposed substantive changes to data protection could plausibly be justified under the derogation clauses available to EU Member States within the GDPR itself. Reforms to the integrity duties of controllers and others are more far-reaching. Nevertheless, their broad structure remains compatible with even the revised version of the Council of Europe framework, Data Protection Convention 108+, which both the EU and UK remain strongly committed to. Finally, the proposals to shift ICO supervision de jure away from a priority focus on individual data subject rights and complaints are difficult to square even with Convention 108+. Nevertheless, de facto the ICO far from acts as a legal champion for the data subject today. Indeed, despite receiving over 36,000 complaints from individuals during 2020-21, it issued just three fines under the GDPR (all concerning data security breaches) and just one injunctive enforcement notice.
What is an Information Society
Why are Information Policies needed
What is an Information Policy
Elements of Information Policy
Who has Information Policies
E-Inclusion
Life Long Learning
E-Business strategies
Infrasture – physical (broadband/e-fibre)
Infrastructure – political / Legal and regulatory
Copyright, Intellectual Property, Data Protection, Freedom of Information
Regulation of Domain Name Spaces ( .ie)
E-government
Information Policy in Ireland
Privacy by Design and by Default + General Data Protection Regulation with Si...Peter Procházka
My presentation for SUG Hungary presented on 26.06.2018 with topic Privacy by Design and by Default and General Data Protection Regulation with Sitecore
Confidentiality refers to not discussing internal goings-on with co-workers. In other instances, it refers to not sharing trade secrets and other company information with competitors, the press or anyone outside of your company.
California Consumer Privacy Act (CCPA): Countdown to ComplianceTinuiti
What is CCPA? The California Consumer Privacy Act increases the transparency of the collection and selling of physical and digital data, while providing California residents with more control over what happens to their personal information that companies collect. CCPA is approaching with a compliance deadline of January 2020. With the countdown to compliance less than 6 months away it’s critical to know how this can potentially impact your business in order to avoid violation fines. Join our webinar as we unpack the key requirements and considerations to keep in mind in order to stay compliant. See how CCPA impacts all advertisers, not just Californians.
Because putting patients’ needs first is essential in the healthcare industries, many healthcare systems
face health information technology (HIT) related challenges and a patient service dilemma.We will firstpresent
the patient service dilemma and provide a high-leveloverview of technologies that have increased the productivity,
efficiency in providing care, and clinical collaboration across their various healthcare campuses. Then, we will
suggest changesto current HIT practice that will enableHealth Systems to be Health Insurance Portability and
Accountability Act (HIPAA) compliant, while meeting the needs of patients, their expectations of care, and the
changing healthcare industry.
GDPR is coming for you whether you’re ready or not. Companies must show compliance by May 25, 2018. Take a look at the presentation to learn more about the new law that is going to change the way data is handled across the world. Read about the how it affects you and the steps you can take to make sure you’re GDPR ready!
About Extentia Information Technology:
Extentia is a global technology and services firm that helps clients transform and realize their digital strategies. With a focus on enterprise mobility, cloud computing, and user experiences, Extentia strives to accomplish and surpass your business goals. Our team is differentiated by an emphasis on excellent design skills that we bring to every project. Extentia’s work environment and culture inspire team members to be innovative and creative, and to provide clients with an exceptional partnership experience.
www.extentia.com
Research Proposal For Thesis PowerPoint Presentation SlidesSlideTeam
If your company needs to submit a Research Proposal For Thesis PowerPoint Presentation Slides look no further. Our researchers have analyzed thousands of proposals on this topic for effectiveness and conversion. Just download our template, add your company data and submit to your client for a positive response. http://bit.ly/37kINry
Research Methods in Library and Information Science: Trends and Tips for Rese...OCLC
Connaway, Lynn Silipigni. 2017. "Research Methods in Library and Information Science: Trends and Tips for Researchers, Students, & Professionals." Presented at the University of Hong Kong, Hong Kong, March 31, 2017.
Explores:
1. Introduction to Privacy Regimes in the United States and Abroad
2. Mobile Applications and Devices
3. Lawful Collection and Use of “Big Data”
4. International Privacy and Cross-Border Data Transfers
5. Data Security Requirements and Data Breach Response
6. IT Outsourcing and the Cloud
7. Recent Developments and Emerging Issues
Personal data: Legal Issues in Research Data Collection and Sharing by EUDAT ...EUDAT
| www.eudat.eu | v1.0, June 2014 - Protection of personal data is a major concern of many. The EU Data Protection Directive (95/46/EC) identifies it as any information relating to an identified or identifiable natural person. However, what exactly do we mean by processing of personal data? When is it lawful? Are there any special categories of personal data? What is consent? What are the obligations of the data controller? Download this presentation and find out.
Who is it for?: Researchers, Data Managers, General public.
Privacy by Design and by Default + General Data Protection Regulation with Si...Peter Procházka
My presentation for SUG Hungary presented on 26.06.2018 with topic Privacy by Design and by Default and General Data Protection Regulation with Sitecore
Confidentiality refers to not discussing internal goings-on with co-workers. In other instances, it refers to not sharing trade secrets and other company information with competitors, the press or anyone outside of your company.
California Consumer Privacy Act (CCPA): Countdown to ComplianceTinuiti
What is CCPA? The California Consumer Privacy Act increases the transparency of the collection and selling of physical and digital data, while providing California residents with more control over what happens to their personal information that companies collect. CCPA is approaching with a compliance deadline of January 2020. With the countdown to compliance less than 6 months away it’s critical to know how this can potentially impact your business in order to avoid violation fines. Join our webinar as we unpack the key requirements and considerations to keep in mind in order to stay compliant. See how CCPA impacts all advertisers, not just Californians.
Because putting patients’ needs first is essential in the healthcare industries, many healthcare systems
face health information technology (HIT) related challenges and a patient service dilemma.We will firstpresent
the patient service dilemma and provide a high-leveloverview of technologies that have increased the productivity,
efficiency in providing care, and clinical collaboration across their various healthcare campuses. Then, we will
suggest changesto current HIT practice that will enableHealth Systems to be Health Insurance Portability and
Accountability Act (HIPAA) compliant, while meeting the needs of patients, their expectations of care, and the
changing healthcare industry.
GDPR is coming for you whether you’re ready or not. Companies must show compliance by May 25, 2018. Take a look at the presentation to learn more about the new law that is going to change the way data is handled across the world. Read about the how it affects you and the steps you can take to make sure you’re GDPR ready!
About Extentia Information Technology:
Extentia is a global technology and services firm that helps clients transform and realize their digital strategies. With a focus on enterprise mobility, cloud computing, and user experiences, Extentia strives to accomplish and surpass your business goals. Our team is differentiated by an emphasis on excellent design skills that we bring to every project. Extentia’s work environment and culture inspire team members to be innovative and creative, and to provide clients with an exceptional partnership experience.
www.extentia.com
Research Proposal For Thesis PowerPoint Presentation SlidesSlideTeam
If your company needs to submit a Research Proposal For Thesis PowerPoint Presentation Slides look no further. Our researchers have analyzed thousands of proposals on this topic for effectiveness and conversion. Just download our template, add your company data and submit to your client for a positive response. http://bit.ly/37kINry
Research Methods in Library and Information Science: Trends and Tips for Rese...OCLC
Connaway, Lynn Silipigni. 2017. "Research Methods in Library and Information Science: Trends and Tips for Researchers, Students, & Professionals." Presented at the University of Hong Kong, Hong Kong, March 31, 2017.
Explores:
1. Introduction to Privacy Regimes in the United States and Abroad
2. Mobile Applications and Devices
3. Lawful Collection and Use of “Big Data”
4. International Privacy and Cross-Border Data Transfers
5. Data Security Requirements and Data Breach Response
6. IT Outsourcing and the Cloud
7. Recent Developments and Emerging Issues
Personal data: Legal Issues in Research Data Collection and Sharing by EUDAT ...EUDAT
| www.eudat.eu | v1.0, June 2014 - Protection of personal data is a major concern of many. The EU Data Protection Directive (95/46/EC) identifies it as any information relating to an identified or identifiable natural person. However, what exactly do we mean by processing of personal data? When is it lawful? Are there any special categories of personal data? What is consent? What are the obligations of the data controller? Download this presentation and find out.
Who is it for?: Researchers, Data Managers, General public.
An itinerary for FAIR and privacy respecting data-driven innovation and researchMarlon Domingus
My talk for the National eScience Symposium 2017 in the Internet of Things track, October 12 2017.
TALK: An itinerary for FAIR and privacy respecting data-driven innovation and research
ABSTRACT: The big picture of the complex landscape of e-science, technology, legal and ethical responsibilities addressed. How to apply privacy values and responsibilities to new technological platforms like the IoT? Can we find an approach that ensures a high level of privacy protection and at the same time supports the interest of researchers and increase innovation? A practical recap of the most important recommendations for researchers creating collaborations and infrastructures.
BDE Webinar: How does the research community benefit from the new EU General ...BigData_Europe
Big Data Europe (BDE) Webinar: How does the research community benefit from the new EU General Data Protection Regulation? By Vigdis Kvalheim, CESSDA Deputy Director, NSD. Held on 25th of May 2016.
POPH: Archival Research and Data Protection: Why are some archives closed? - ...Leah Henrickson
*SHARED WITH PRESENTER'S CONSENT.*
Adrienne Muir and Charles Oppenheim's presentation at the Privacy, Open Data and the Humanities Workshop, sponsored by Loughborough University’s Digital Humanities Research Group in the School of Arts, English and Drama.
Abstract:
Why do archives sometimes restrict access to archival material containing personal data? “Personal data” relates to living identified or identifiable individuals. Data protection law provides exemptions for certain uses of personal data.
One such exemption is for research purposes, allowing personal data to be recorded and subsequently be made available to third parties subject to certain conditions. The General Data Protection Regulation lays down rules for processing (i.e., storing, manipulating, or disseminating) for archiving purposes in the public interest or for research. Importantly, derogations from some user rights (such as the right to object to processing) are allowed, if such user rights are likely to render impossible or seriously impair the research. If archivists place restrictions on access to archived materials under their control, it is important to understand whether this is for data protection, or other reasons. The National Archives Code of Practice on data protection states that archives should try to assist researchers wanting to access personal data in their archive. If archival materials contain data solely relating to deceased individuals, neither data protection nor defamation laws apply. Is the purpose of blanket archival access policies, such as the application of a 100-year rule for archival records relating to individuals, purely for compliance with data protection law? If there are other reasons, this should be made clear by the archive.
So why are some archives kept dark? Arguably, the anonymised results of statistical analysis pose no threat to individuals if there is no possibility of combining the results with other data to re-identify them. Should there be restrictions on access to archived materials for this type of research? Does data protection law prevent research about living identifiable individuals and should it? If not, are access restrictions imposed for other legal, ethical or practical reasons?
CINECA webinar slides: Status Update Code of Conduct: Teaming up & Talking ab...CINECAProject
Committed to the drafting of a Code of Conduct for the sector of health research according to Art. 40 GDPR, our initiative is advancing slowly but steadily. Throughout Europe, national jurisdictions differ to a great deal in their interpretations of the GDPR, especially in regard to its application in health research. This is due to some quite vague provisions (public interest, not incompatible clause) as wells as to numerous exemption/derogation clauses concerning the use of health data for research purposes, which encourage States to set up national rules – enhancing fragmentation. Notably, a Code of Conduct can help to bridge the harmonization gaps that may exist between Member States in their application of data protection law. On a practical level, a code is potentially a cost-effective method to achieve greater levels of consistency of protection as well as a mechanism to demonstrate compliance with the GDPR. By spring 2020, several hundred individuals representing around 90 organizations in the field of health research have indicated their interest and support for the Code of Conduct for Health Research. At this stage, this does not yet indicate an endorsement but means that they see a benefit in the development of such a code and are interested in partaking in the process. Additionally, several exchanges take place with national and sectoral codes in order to use synergies and finds ways for collaboration. This webinar is intended to inform you about the latest results.
The CINECA webinar series aims to discuss ways to address common challenges and share best practices in the field of cohort data analysis, as well as distribute CINECA project results. All CINECA webinars include an audience Q&A session during which attendees can ask questions and make suggestions. Please note that all webinars are recorded and available for posterior viewing. CINECA webinars include an audience Q&A session during which attendees can ask questions and make suggestions.
This webinar took place on 1st October 2020 and is part of the CINECA webinar series. It is best viewed in full screen mode using Google Chrome.
For previous and upcoming CINECA webinars see:
https://www.cineca-project.eu/webinars
Ethics and data protection
14 November 2018
Disclaimer
This document has been drafted by a panel of experts at the request of the European Commission (DG
Research and Innovation) and aims at raising awareness in the scientific community, and in particular with
beneficiaries of EU research and innovation projects. It does not constitute official EU guidance. Neither the
European Commission nor any person acting on their behalf can be made responsible for the use made of it.
2
Contents
I. Introduction ............................................................................................................................. 3
II. Identifying and addressing ethics issues in your research proposal ....................................... 6
III. Pseudonymisation and anonymisation ................................................................................... 7
IV. Data protection by design and default .................................................................................... 9
V. Informed consent to data processing.................................................................................... 10
VI. Collecting data on children .................................................................................................... 12
VII. Use of previously collected data (‘secondary use’) ............................................................... 12
VIII. Data protection impact assessments .................................................................................... 14
IX. Profiling, tracking, surveillance, automated decision-making and big data ......................... 16
X. Data security .......................................................................................................................... 17
XI. Transfer of personal data to non-EU countries ..................................................................... 18
XII. Collection of personal data outside the European Union ..................................................... 19
XIII. Deletion and archiving of data .............................................................................................. 20
XIV. Data protection officers and other sources of help .............................................................. 21
3
I. Introduction
Data protection is both a central issue for research ethics in Europe and a fundamental human right.
It is intimately linked to autonomy and human dignity, and the principle that everyone should be
valued and respected. For this principle to guide the development of today’s information society,
data protection must be rigorously applied by the research community.
The right to data protection is enshrined in the EU Charter of Fundamental Rights and the Treaty on
the Functioning of the European Union, which give effect to individuals’ right to privacy by providing
them with control over the way information about the ...
Data Privacy and consent management .. .ClinosolIndia
Data privacy and consent management are critical aspects of ensuring that individuals' personal information is handled responsibly and ethically, particularly in healthcare settings where sensitive medical data is involved. Data privacy refers to the protection of personal information from unauthorized access, use, or disclosure, while consent management involves obtaining and managing individuals' permissions for the collection, storage, and processing of their data.
In healthcare, patients entrust providers with their sensitive medical information, expecting that it will be kept confidential and used only for legitimate purposes related to their care. Robust data privacy measures include encryption, access controls, and anonymization techniques to safeguard patient data from unauthorized access or breaches. Additionally, healthcare organizations must adhere to regulatory standards such as HIPAA in the United States or GDPR in the European Union, which outline specific requirements for the protection of patient information and impose penalties for non-compliance.
Consent management plays a crucial role in ensuring that individuals have control over how their data is used. Patients should be informed about the purposes for which their data will be collected and processed, as well as any potential risks or benefits associated with its use. Obtaining informed consent involves providing individuals with clear and transparent information about their privacy rights and giving them the opportunity to consent to or decline the use of their data for specific purposes. Consent management systems help healthcare organizations track and manage patients' consent preferences, ensuring that data is used in accordance with their wishes and legal requirements.
Effective data privacy and consent management practices not only protect individuals' privacy rights but also foster trust and transparency in healthcare relationships. By implementing robust security measures, respecting patients' autonomy, and promoting informed decision-making, healthcare organizations can uphold the principles of data privacy and consent while leveraging data responsibly to improve patient care and outcomes.
General Data Protection Regulation or GDPRNupur Samaddar
General Data Protection Regulation or GDPR,he way companies across the world will handle their customers' personal information and creating strengthened and unified data protection for all individuals within the EU.
20200504_Research Data & the GDPR: How Open is Open?OpenAIRE
Presentation by Prodromos Tsiavos (Senior Legal Advisor - ARC/ Director - Onassis Group) as delivered during the OpenAIRE Legal Policy Webinar series on May 4th 2020.
More information and recordings: https://www.openaire.eu/item/openaire-legal-policy-webinars
GDPR - Thoughts on the EU Data Protection Regulation, Research and LibrariesLIBER Europe
This presentation by Jonas Holm was part of the "Research Data Support Meets Disciplines: Opportunities & Challenges" workshop at LIBER's 2017 Annual Conference in Patras, Greece. For more information, see www.libereurope.eu
Sharing personal data and the GDPR - how can it be done - Francisco Romero Pa...SURFevents
Sharing personal data in the age of the GDPR is a tough challenge. Fear of non-compliance has made researchers reluctant to comply with requests to share their research data when it contains personal data. While anonymization is often hailed as the solution to avoid non-compliance, achieving fully anonymized data according to the GDPR is quite challenging, and it often produces data of lesser utility than the original source. In this workshop, we will discuss how personal data can be shared under the GDPR. We will do so showing two resources developed at Utrecht University: the Data Privacy Handbook (https://uu.nl/privacyhandbook) and the privacy scan (https://geo-data-support.sites.uu.nl/personal-data/privacy-review/). These resources offer concrete guidelines in the design and execution of a research project. The workshop will end with a discussion on frequently-encountered data sharing issues and ways to circumvent those issues
20200429_Research Data & the GDPR: How Open is Open? (updated version)OpenAIRE
Presentation by Prodromos Tsiavos (Senior Legal Advisor - ARC/ Director - Onassis Group) as delivered during the OpenAIRE Legal Policy Webinar series on April 29th 2020.
More information and recordings: https://www.openaire.eu/item/openaire-legal-policy-webinars
workshop session delivered alongside 'Making your thesis legal' workshop in July and September 2013 to PhD, MPhil, DrPh students who are completing their thesis. Discusses standards for sharing data, issues that need addressing, formats, data protection, usability, licenses
Similar to Legal and ethical considerations for sharing research data (20)
OpenAIRE Content Providers Community Call, November 4th, 2020
This call was focused on the PROVIDE future developments, functionalities wishlist and PROVIDE service in EOSC.
Was also an opportunity to share the most recent updates and novelties in the OpenAIRE Content Provider Dashboard, and to get feedback from community.
Recordings: https://youtu.be/wY4fOS767Us
Follow the Community activities at https://www.openaire.eu/provide-community-calls
OpenAIRE in the European Open Science Cloud (EOSC)OpenAIRE
Openness is the success factor for EOSC. OpenAIRE has been working in delivering an open access scholarly communication in Europe for the past 10 years and we now present how our work fits into the EOSC core developments
OpenAIRE Content Providers Community Call, October 7th, 2020
This call was focused on the OpenAIRE Broker Service, specifying how the service works to deploy the enrichment events to the Content Providers managers.
Was also an opportunity to share the most recent updates and novelties in the OpenAIRE Content Provider Dashboard, and to get feedback from community.
Recording: https://youtu.be/3sF4B58EGcs
Follow the Community activities at https://www.openaire.eu/provide-community-calls
OpenAIRE Content Providers Community Call, July 1st, 2020
This call was focused on Data Repositories namely the OpenAIRE Research Graph and Data Repositories, the OpenAIRE Content Acquisition Policy, and the Guidelines for Data Archive Managers.
Was also an opportunity to share the most recent updates and novelties in the OpenAIRE Content Provider Dashboard, and to get feedback from community.
Follow the Community activities at https://www.openaire.eu/provide-community-calls
OpenAIRE Content Providers Community Call. May 6th, 2020.
This Call focused the presentation of the new User Interface of Provide Dashboard and the presentation of 4 use cases using the Provide service.
Was also an opportunity to share the most recent updates and novelties in the OpenAIRE Content Provider Dashboard, and to get feedback from community.
Recording available here: https://youtu.be/J4m_ryRxtnY
20200504_OpenAIRE Legal Policy Webinar: GDPR and Sharing DataOpenAIRE
Presentation by Jacques Flores Dourojeanni (Research Data Management Consultant Utrecht University Library), as delivered during the OpenAIRE Legal Policy Webinar series on May 4th 2020.
More information and recordings: https://www.openaire.eu/item/openaire-legal-policy-webinars
20200504_Data, Data Ownership and Open ScienceOpenAIRE
Presentation by Thomas Margoni (Senior Lecturer in Intellectual Property and Internet Law, Co-director, CREATe, University of Glasgow) as delivered during the OpenAIRE Legal Policy Webinar series on May 4th 2020.
More information and recordings: https://www.openaire.eu/item/openaire-legal-policy-webinars
20200429_Data, Data Ownership and Open ScienceOpenAIRE
Presentation by Thomas Margoni (Senior Lecturer in Intellectual Property and Internet Law, Co-director, CREATe, University of Glasgow) as delivered during the OpenAIRE Legal Policy Webinar series on April 29th 2020.
More information and recordings: https://www.openaire.eu/item/openaire-legal-policy-webinars
20200429_OpenAIRE Legal Policy Webinar: GDPR and Sharing DataOpenAIRE
Presentation by Jacques Flores Dourojeanni (Research Data Management Consultant Utrecht University Library), as delivered during the OpenAIRE Legal Policy Webinar series on April 29th 2020.
More information and recordings: https://www.openaire.eu/item/openaire-legal-policy-webinars
COVID-19: Activities, tools, best practice and contact points in GreeceOpenAIRE
Presentation from the webinar organized by the Greek OpenAIRE and RDA Nodes (Athena RC) and Elixir-GR to inform participants of EU and national efforts, in collaboration with the following research organizations: Flemming, CERTH, HEAL-Link, Demokritos, Univ. of Athens (Medical School).
Presentation of the 2nd Content Providers Community Call, targeting the following topics: 1) OpenAIRE Content provider dashboard updates; Main topic: DSpace-CRIS for OpenAIRE: implementation of the CRIS guidelines and beyond; 3) Community questions & comments.
Presentation of the 2nd Content Providers Community Call, targeting the following topics: 1) OpenAIRE Content provider dashboard updates;
2) OpenAIRE aggregation and enrichment processes: specifications and good practices;
3) Community questions & comments.
Presentation of the 2nd Content Providers Community Call, targeting the following topics: 1) OpenAIRE infrastructure updates;
2) Main topic: OpenAIRE Broker Service;
3) Community questions & comments.
Presentation of the 2nd Content Providers Community Call, targeting the following topics: 1) OpenAIRE infrastructure updates;
2) Main topic: OpenAIRE Usage Statistics service: technical details and upcoming developments;
3) Community questions & comments.
Earliest Galaxies in the JADES Origins Field: Luminosity Function and Cosmic ...Sérgio Sacani
We characterize the earliest galaxy population in the JADES Origins Field (JOF), the deepest
imaging field observed with JWST. We make use of the ancillary Hubble optical images (5 filters
spanning 0.4−0.9µm) and novel JWST images with 14 filters spanning 0.8−5µm, including 7 mediumband filters, and reaching total exposure times of up to 46 hours per filter. We combine all our data
at > 2.3µm to construct an ultradeep image, reaching as deep as ≈ 31.4 AB mag in the stack and
30.3-31.0 AB mag (5σ, r = 0.1” circular aperture) in individual filters. We measure photometric
redshifts and use robust selection criteria to identify a sample of eight galaxy candidates at redshifts
z = 11.5 − 15. These objects show compact half-light radii of R1/2 ∼ 50 − 200pc, stellar masses of
M⋆ ∼ 107−108M⊙, and star-formation rates of SFR ∼ 0.1−1 M⊙ yr−1
. Our search finds no candidates
at 15 < z < 20, placing upper limits at these redshifts. We develop a forward modeling approach to
infer the properties of the evolving luminosity function without binning in redshift or luminosity that
marginalizes over the photometric redshift uncertainty of our candidate galaxies and incorporates the
impact of non-detections. We find a z = 12 luminosity function in good agreement with prior results,
and that the luminosity function normalization and UV luminosity density decline by a factor of ∼ 2.5
from z = 12 to z = 14. We discuss the possible implications of our results in the context of theoretical
models for evolution of the dark matter halo mass function.
Cancer cell metabolism: special Reference to Lactate PathwayAADYARAJPANDEY1
Normal Cell Metabolism:
Cellular respiration describes the series of steps that cells use to break down sugar and other chemicals to get the energy we need to function.
Energy is stored in the bonds of glucose and when glucose is broken down, much of that energy is released.
Cell utilize energy in the form of ATP.
The first step of respiration is called glycolysis. In a series of steps, glycolysis breaks glucose into two smaller molecules - a chemical called pyruvate. A small amount of ATP is formed during this process.
Most healthy cells continue the breakdown in a second process, called the Kreb's cycle. The Kreb's cycle allows cells to “burn” the pyruvates made in glycolysis to get more ATP.
The last step in the breakdown of glucose is called oxidative phosphorylation (Ox-Phos).
It takes place in specialized cell structures called mitochondria. This process produces a large amount of ATP. Importantly, cells need oxygen to complete oxidative phosphorylation.
If a cell completes only glycolysis, only 2 molecules of ATP are made per glucose. However, if the cell completes the entire respiration process (glycolysis - Kreb's - oxidative phosphorylation), about 36 molecules of ATP are created, giving it much more energy to use.
IN CANCER CELL:
Unlike healthy cells that "burn" the entire molecule of sugar to capture a large amount of energy as ATP, cancer cells are wasteful.
Cancer cells only partially break down sugar molecules. They overuse the first step of respiration, glycolysis. They frequently do not complete the second step, oxidative phosphorylation.
This results in only 2 molecules of ATP per each glucose molecule instead of the 36 or so ATPs healthy cells gain. As a result, cancer cells need to use a lot more sugar molecules to get enough energy to survive.
Unlike healthy cells that "burn" the entire molecule of sugar to capture a large amount of energy as ATP, cancer cells are wasteful.
Cancer cells only partially break down sugar molecules. They overuse the first step of respiration, glycolysis. They frequently do not complete the second step, oxidative phosphorylation.
This results in only 2 molecules of ATP per each glucose molecule instead of the 36 or so ATPs healthy cells gain. As a result, cancer cells need to use a lot more sugar molecules to get enough energy to survive.
introduction to WARBERG PHENOMENA:
WARBURG EFFECT Usually, cancer cells are highly glycolytic (glucose addiction) and take up more glucose than do normal cells from outside.
Otto Heinrich Warburg (; 8 October 1883 – 1 August 1970) In 1931 was awarded the Nobel Prize in Physiology for his "discovery of the nature and mode of action of the respiratory enzyme.
WARNBURG EFFECT : cancer cells under aerobic (well-oxygenated) conditions to metabolize glucose to lactate (aerobic glycolysis) is known as the Warburg effect. Warburg made the observation that tumor slices consume glucose and secrete lactate at a higher rate than normal tissues.
A brief information about the SCOP protein database used in bioinformatics.
The Structural Classification of Proteins (SCOP) database is a comprehensive and authoritative resource for the structural and evolutionary relationships of proteins. It provides a detailed and curated classification of protein structures, grouping them into families, superfamilies, and folds based on their structural and sequence similarities.
Slide 1: Title Slide
Extrachromosomal Inheritance
Slide 2: Introduction to Extrachromosomal Inheritance
Definition: Extrachromosomal inheritance refers to the transmission of genetic material that is not found within the nucleus.
Key Components: Involves genes located in mitochondria, chloroplasts, and plasmids.
Slide 3: Mitochondrial Inheritance
Mitochondria: Organelles responsible for energy production.
Mitochondrial DNA (mtDNA): Circular DNA molecule found in mitochondria.
Inheritance Pattern: Maternally inherited, meaning it is passed from mothers to all their offspring.
Diseases: Examples include Leber’s hereditary optic neuropathy (LHON) and mitochondrial myopathy.
Slide 4: Chloroplast Inheritance
Chloroplasts: Organelles responsible for photosynthesis in plants.
Chloroplast DNA (cpDNA): Circular DNA molecule found in chloroplasts.
Inheritance Pattern: Often maternally inherited in most plants, but can vary in some species.
Examples: Variegation in plants, where leaf color patterns are determined by chloroplast DNA.
Slide 5: Plasmid Inheritance
Plasmids: Small, circular DNA molecules found in bacteria and some eukaryotes.
Features: Can carry antibiotic resistance genes and can be transferred between cells through processes like conjugation.
Significance: Important in biotechnology for gene cloning and genetic engineering.
Slide 6: Mechanisms of Extrachromosomal Inheritance
Non-Mendelian Patterns: Do not follow Mendel’s laws of inheritance.
Cytoplasmic Segregation: During cell division, organelles like mitochondria and chloroplasts are randomly distributed to daughter cells.
Heteroplasmy: Presence of more than one type of organellar genome within a cell, leading to variation in expression.
Slide 7: Examples of Extrachromosomal Inheritance
Four O’clock Plant (Mirabilis jalapa): Shows variegated leaves due to different cpDNA in leaf cells.
Petite Mutants in Yeast: Result from mutations in mitochondrial DNA affecting respiration.
Slide 8: Importance of Extrachromosomal Inheritance
Evolution: Provides insight into the evolution of eukaryotic cells.
Medicine: Understanding mitochondrial inheritance helps in diagnosing and treating mitochondrial diseases.
Agriculture: Chloroplast inheritance can be used in plant breeding and genetic modification.
Slide 9: Recent Research and Advances
Gene Editing: Techniques like CRISPR-Cas9 are being used to edit mitochondrial and chloroplast DNA.
Therapies: Development of mitochondrial replacement therapy (MRT) for preventing mitochondrial diseases.
Slide 10: Conclusion
Summary: Extrachromosomal inheritance involves the transmission of genetic material outside the nucleus and plays a crucial role in genetics, medicine, and biotechnology.
Future Directions: Continued research and technological advancements hold promise for new treatments and applications.
Slide 11: Questions and Discussion
Invite Audience: Open the floor for any questions or further discussion on the topic.
What is greenhouse gasses and how many gasses are there to affect the Earth.moosaasad1975
What are greenhouse gasses how they affect the earth and its environment what is the future of the environment and earth how the weather and the climate effects.
Professional air quality monitoring systems provide immediate, on-site data for analysis, compliance, and decision-making.
Monitor common gases, weather parameters, particulates.
Multi-source connectivity as the driver of solar wind variability in the heli...Sérgio Sacani
The ambient solar wind that flls the heliosphere originates from multiple
sources in the solar corona and is highly structured. It is often described
as high-speed, relatively homogeneous, plasma streams from coronal
holes and slow-speed, highly variable, streams whose source regions are
under debate. A key goal of ESA/NASA’s Solar Orbiter mission is to identify
solar wind sources and understand what drives the complexity seen in the
heliosphere. By combining magnetic feld modelling and spectroscopic
techniques with high-resolution observations and measurements, we show
that the solar wind variability detected in situ by Solar Orbiter in March
2022 is driven by spatio-temporal changes in the magnetic connectivity to
multiple sources in the solar atmosphere. The magnetic feld footpoints
connected to the spacecraft moved from the boundaries of a coronal hole
to one active region (12961) and then across to another region (12957). This
is refected in the in situ measurements, which show the transition from fast
to highly Alfvénic then to slow solar wind that is disrupted by the arrival of
a coronal mass ejection. Our results describe solar wind variability at 0.5 au
but are applicable to near-Earth observatories.
Legal and ethical considerations for sharing research data
1. Legal and ethical considerations
for sharing research data: Open
Science for SSH researchers
Irena Vipavc Brvar
Slovenian Social Science Data Archives
Lead of CESSDA Training Working Group
Open Access Week 2018, 22 – 26 October 2018
2. Disclaimer
The information in this presentation is based on our current interpretation of the legislation and its
implications for research and the archiving of research data.
This is a very fluid area and thus changes are still possible. National legislations are still being
processed.
This presentation does not constitute, or should not be construed as, legal advice and / or guidance.
You should seek professional legal advice where appropriate.
3. Social Science Data Archives (ADP) / CESSDA
• Established in 1997
• Slovenian national data
repository for social sciences
• 600 social science surveys with
data in a data catalogue + 150
with metadata
• Member of CESSDA ERIC
16 Members +1 Observer
5. Chapters in the expert guide on Data Management
Expert tips
Available end
of 2018
6. The General Data Protection Regulation (GDPR)
• Implemented on 25 May 2018 in all EU countries.
• Applies to personal data and data of living persons.
• Applies to any controller or processor:
- in the EU, who processes personal data regardless of whether the processing takes
place in the EU or not
- outside the EU if they process personal data of EU citizens
• Will be supplemented by national laws.
Source: Høgetveit Myhren, 2018
7. GDPR –implications for research
More continuity than change, however:
•GDPR has a limited flexibility, but leaves room for national supplementary provisions, including
derogations, and this possibility applies especially to the field of research.
•Individuals get more rights i.e right to data portability.
•Institutions will be held more responsible for the data they hold and process –“accountability”.
•Increased fines for breaching GDPR and the misuse of personal data.
•Broad definition of scientific research.
•Privacy by design and default.
•Data Protection Impact Assessment (DPIA).
•Code of conduct for various sectors is encouraged.
•New requirements for information to be provided to data subjects.
•New requirements for consent.
•Broad consent to certain areas of scientific research is possible.
Source: Høgetveit Myhren, 2018
8. Personal data
The GDPR defines „personal data“ as „any information relating to an identified or identifiable natural
person“ („data subject“) (Article 4(1)).
Identifiable natural person is defined as one „who can be identified, directly or indirectly, by reference
to an identifier such as a name, an identification number, location data, an online identifier or to one
or more factors specific to the physical, physiological, genetic, mental, economic, cultural or social
identity of that natural person.“..
10. What is pseudonymous data?
The handling of personal data in such a way that no individuals can be identified from the data
without a “key” that allows the data to be re-identified.
•Involves removing or obscuring direct and indirect identifiers
•The key must be kept separately and secure
•Explicitly encouraged as a security measure in the GDPR
•Pseudonymised data or encrypted data are still personal data
Source: Høgetveit Myhren, 2018
11. What is Anonymous data?
• Information which does not relate to an identified or identifiable natural person or
• personal data rendered anonymous in such a manner that the data subject is not or
no longer identifiable.
• Anonymisation of data should be irrevocable, but should also be checked at regular
intervals in light of new technologies.
• GDPR does not apply to anonymous data (Recital 26)
Source: Høgetveit Myhren, 2018
12. Six principles (Article 5)
Personal data must be:
a) Processed lawfully, fairly and in a transparent manner
b) Collected for specific purposes and not processed further for incompatible purposes
(purpose limitation) – exemption for research/archiving purposes in accordance with
art.89 (1) –further processing not incompatible with original purpose
c) Adequate, relevant and limited to what is necessary –(Data minimisation)
d) Accurate and where necessary up to date
e) Kept in identifiable form no longer than necessary (Storage limitation) - exemption for
research/archiving purposes in line with art.89 (1).
f) Processed with appropriate security – ensure data integrity and confidentiality
The controller shall be able to demonstrate compliance - Accountability
Source: Høgetveit Myhren, 2018
13. Legal grounds for processing
All processing of personal data requires legal basis. The most common for research are:
Lawfulness of processing (Article 6):
a) consent
e) necessary for the performance of a task carried out in the public interest
f) necessary for a legitimate interest pursued by the controller
Special categories of data (Article 9)
Prohibited unless:
a) explicit consent
e) personal data are manifestly made public by the data subject
j) necessary for archiving, scientific or statistical purposes in accordance with Article
89.1 and based on Union or Member State law
Source: Høgetveit Myhren, 2018
14. Data Subject Rights
1. The right to be informed (Article 13 or 14)
2. The right of access (Article 15)
3. The right to rectification (Articled 16):
4. The right to erasure – the „right to be forgotten“ (Article 17)
5. The right to restrict processing (Article 18 and 19)
6. The right to data portability (Article 20):
7. The right to object (Article 21); and
8. Rights in relation to automated individual decision-making and profiling (Article 22).
15. Special provisions for archiving and research
purposes
When in accordance with Article 89 (1):
•Further processing is not considered to be incompatible with the initial purposes
(Article 5(1)(b)).
•Personal data may be stored for longer periods (Article 5 ,1 (e))
•Exemptions from data subjects’ rights:
-“right to be forgotten” (Article 17.2 (d))
-“right to object” (Article 21.6)
-“right to information” (Article 14.5 (a,b)
•Union and Member States may create further derogations from the data subjects’
rights .
Source: Høgetveit Myhren, 2018
16. Research Ethics
Disciplinary Code of Ethics (ASA)
National Code of Ethics – Soc. Assoc.
European Code of Research Integrity
University (UNI-LJ)
Institute
Funder – H2020 / other EC projects / grants
Scientific Journal <-ethical committee approval before publishing
Ethics are an integral part of a research project, from
the conceptual stage of the research proposal to the
end of a research project.
17. Guidelines for ensuring compliance with ethical
principles in Horizon 2020 / Main ethical principles
1. Respecting human dignity and integrity
2. Ensuring honesty and transparency towards research subjects and, notably, getting free and
informed consent (as well as assent whenever relevant)
3. Protecting vulnerable persons
4. Ensuring privacy and confidentiality
5. Promoting justice and inclusiveness
6. Minimising harm and maximising benefit
7. Sharing the benefits with disadvantaged populations, especially if the research is being
carried out in developing countries
8. Maximising animal welfare, by ensuring replacement, reduction and refinement in animal
research
9. Respecting and protecting the environment and future generations
10. Following the highest standards of research integrity (i.e. avoiding any kind of fabrication,
falsification, plagiarism, unjustified double funding or other type of research misconduct)
18. Ethical Review Process
Is about helping you as a researcher to think through the ethical issues
surrounding your research.
The principles of good research practice encourage you to consider the wider consequences of
your research and engage with the interest of your participants.
Ethics review by a Research Ethics Committee (REC) is typically required when (sensitive)
personal data are being collected or when people are involved.
The role of a REC is to protect the safety, rights and well-being of research participants and to
promote ethically sound research.
Among other duties, this involves ensuring that research complies with national and
international data protection laws regarding the use of personal information collected in
research.
Source: Summers,2018
19. How to complete your ethics self-assessment
(H2020)
“Consider that ethics issues arise in many areas of research. Apart from the obvious example,
the medical field, research protocols in social sciences, ethnography, psychology,
environmental studies, security research, etc. may involve the voluntary participation of
research subjects and the collection of data that might be considered as personal. You must
protect your volunteers, yourself and your researcher colleagues.
Start thinking about ethics while designing your research protocols. Don't wait until the last
minute to seek advice or check requirements under national and EU law.
Your first source should always be at your institution (specialised ethics departments or ethic
advisers UNI, hospital research ethics committees, data protection officers). “
source
20. Research involve human participants? (H2020, part)
source
Are they volunteers for social or human sci.
research?
Details of recruitment, inclusion and exclusion criteria and
informed consent procedures.
Are they persons unable to give informed consent
(including children / minors)?
Details of your procedures for obtaining approval from the
guardian / legal representative and the agreement of the children
or other minors. What steps will you take to ensure that
participants are not subjected to any form of coercion?
Are they vulnerable individuals or groups
Details of the type of vulnerability. Details of recruitment,
inclusion and exclusion criteria and informed consent procedures.
These must demonstrate appropriate efforts to ensure fully
informed understanding of the implication of participants.
Are they children/ minors?
Details of the age range. What are your assent procedures and
parental consent for children and other minors? What steps will
you take to ensure the welfare of the child or other minor? What
justification is there for involving minors?
Potential misuse of research results -> Risk assessment
21. Personal data (H2020 – Self-Assessment)
Does your research involve personal data collection and/or processing?
Does it involve the collection or processing of sensitive personal data (e.g. health, sexual
lifestyle, ethnicity, political opinion, religious or philosophical conviction)?
Does it involve processing of genetic information?
Does it involve tracking or observation of participants (e.g. surveillance or localization data,
such as IP address, cookies etc.)?
Does your research involve further processing of previously collected personal data (‘secondary
use’) (including use of pre-existing data sets or sources, merging existing data sets, sharing
data with non-EU member states)?
source
22. Personal data – information to be provided
Details of your procedures for data collection, storage, protection, retention, transfer,
destruction or re-use (including collection methodology (digital recording, picture, etc.),
methods of storage and exchange (LAN, cloud, etc.), data structure and preservation
(encryption, anonymisation, etc.), data-merging or exchange plan, commercial exploitation of
data sets, etc.
Details of your data safety procedures (protective measures to avoid unforeseen usage or
disclosure, including mosaic effect, i.e. obtaining identification by merging multiple sources).
Details (documents) of data transfers to non-EU countries (type of data transferred and country
to which it is transferred).
->Copies of notifications/authorisations for collecting and/or processing the personal data (if required).
->Informed Consent Forms + Information Sheets + Other consent documents (opt-in processes, etc.) (if
relevant). source
23. The ethical and legal sharing of data
Respect Ethical standards!!!!
Use a combination of consent, information sheet, anonymising data, gaining clarity over who
owns the copyright to your data and controlling access.
Informed consent is the process by which a researcher discloses appropriate information about
the research so that a participant may make a voluntary, informed choice to accept or refuse to
cooperate.
Agreement & Licencing
24. Consent (Article 4 and 7)
Definition: any freely given, specific, informed and unambigous indication from a person that
affirms that his/her personal data may be processed
•Freely given: must be a genuine choice, be able to refuse/withdraw without consequences,
not be in a dependent relationship
•Specific: not explained in the GDPR, but guidance from WP29 (2011) - clear information on
extent and consequences
•Informed: Content and form requirements, should be easily understood, easily accessible,
clear and simple language, especially when the information is given to children
•Active: “opt in” -silence, pre-ticked boxes, and inactivity are not valid (Recital 32)
Source: Høgetveit Myhren, 2018
25. Informed Consent – Research (1)
To obtain informed consent in practice, researchers should:
• Inform participants about the purpose of the research;
• Discuss what will happen to their contribution (including the future
archiving and sharing of their data);
• Indicate the steps that will be taken to safeguard their anonymity
and confidentiality;
• Outline their right to withdraw from the research, and how to do this.
Source: Summers, 2018
26. Information Sheet (Article 13 and 14)
A/ General information about the research and the collected research data
• Purpose of the research
• Type of research intervention, e.g. questionnaire, interview, etc.
• Voluntary nature of participation
• Benefits and risks of participating
• Procedures for withdrawal from the study
• Usage of the data during research, dissemination and storage, including how the information will be
shared with participants and any access and benefits-sharing that may be applicable (e.g. traditional
knowledge under the Nagoya protocol)
• Future publishing, archiving and reuse of the data, explaining to participants the benefits of data sharing
and indicating whether research data will be deposited in a data repository, naming the organization
responsible for the repository (e.g. Slovenian Social Science Data Archives, your institutional repository)
• Contact details of the researcher, with institution, funding source, how to file a complaint
Source: Summers, 2018
27. Information Sheet
B/ Additional information if personal information is collected from participants (for
example their name, where they live, information that can disclose their identity)
• How personal information will be processed and stored, and for how long (e.g. signed consent
forms, names or email addresses in online surveys, people’s visuals in video recordings)
• Procedures for maintaining confidentiality of information about the participant and information
that the participant shares
• Procedures for ensuring ethical use of the data: procedures for safeguarding personal
information, maintaining confidentiality and de-identifying (anonymising) data, especially in
relation to data archiving and reuse
Source: Summers, 2018
28. Example from SERISS (1/2)
Your privacy - safe storage and further use of the data
•We will treat all the information about you with strict confidentiality and in accordance with EUs
General Data Protection Regulation (GDPR) and national data protection laws.
•Your name and contact information will be replaced by a code. Only the national team, that collects
data, will have access to the code list.
•When the survey is finished, the national team will send the data, without your name or contact
details, to the Archive (NSD - Norwegian Centre for Research Data, Bergen, Norway).
•Your name and contact information will be deleted by [MM.YYYY].
•The rest of the collected data will be securely stored for an indefinite period. They are made
available for use in scientific studies by researchers, students and others interested in Europeans’
social attitudes.
…..
Source: Høgetveit Myhren, 2018
29. Example from SERISS (2/2)
…..
There is a slight possibility that some background information (such as citizenship, age, country of
birth, occupation, ancestry and region <expand>) may identify you. In such cases, access will only be
given to researchers after approved applications and confidentiality agreements are in place.
•The results will be published on our website in [month/year]. We will make every effort to ensure
that no participant will be recognisable in any publications (scientific papers, website etc.) based on
the study.
Source: Høgetveit Myhren, 2018
30. Ethical Arguments for Archiving Data
» Not burden over-researched, vulnerable groups
» Make best use of hard-to-obtain data, e.g. elites, socially excluded, over-
researched
» Extend voices of participants
» Provide greater research transparency
Source: Summers, 2018
By Netalloy
31. Concluding remarks
• GDPR is research friendly and safeguards the interests and the needs of scientific research
institutions.
• The legal bases for processing data for research purposes are largely in place, but the
possibility for member states to introduce conditions for certain types of data may pose a
challenge.
• Increased risk of re-identification creates a need for greater transparency to retain public
trust.
• New requirements for information to be provided.
• New requirements for consent:
– Must be able to document that consent has been given.
– As easy to give as to withdraw.
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