Post on 22-Jan-2018
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Founder and Chair of the Scientific Research Group in Egypt
Ex-Dean of faculty of computers and Information, Beni-Suef University
Professor at Cairo University
Faculty of Computers & Information
Information Technology Department
Email: abo@egyptscience.net &Aboitcairo@fci-cu.edu.eg
http://egyptscience.net/
http://www.fci.cu.edu.eg/~abo
http://scholar.cu.edu.eg/abo
https://eg.linkedin.com/in/aboul-ella-hassanien-48a9528
Sharing Scientific Data: Ethics and Consent
2017القواعد واللوائح التنفيذية لقانون حماية البيانات المصرية لعام
كلية الحاسبات والمعلومات
By Professor Aboul Ella Hassanien
السبت الموافق 2018يناير 20
11الساعة صباحا
Permission
FCI-Cairo University, Saturday 20 January 2018
The essential mission of SRGE toward the research
and education in Egypt is to foster learning and
promoting research integrity in the current and next
generation of researchers in Egypt. SRGE is
rededicating itself to this fundamental purpose.
**Slides are adapted and compiled from different resources, presentations and web site
on the internet as well as experiences
***https://www.ukdataservice.ac.uk/manage-data
FCI-Cairo University, Saturday 20 January 2018
***https://www.ukdataservice.ac.uk/manage-data/handbook
Agenda Ethical obligations: big image
Data and Research Data
What is your research data type?
Data protection and ethics
Do I need consent to share my data?
The life of data and its life cycle
The ways to share your research data
Data centers, advantages and disadvantages
Why share research data
Data Protection Act and its eight principles
What is copyright, who owns it and how long does it last?
Hippocratic oath and data confidentiality and privacy
Consent
Real cases
Data are the infrastructure of science.
Ethical obligations إلى البحوث تهدف أن ينبغي
لألفراد فائدة أقصى تحقيق
وتقليل والبشرية والمجتمع
وينبغي واألضرار المخاطر
األفراد وكرامة حقوق احترام
تكون أن وينبغي والجماعات
فاعلة المجتمعية المشاركة
إجراء وينبغي ومؤثرة
و وشفافية بنزاهة البحوث
المسؤولية خطوط تحديد
وينبغي بوضوح والمساءلة
البحوث، استقاللية على الحفاظ
المصالح تضارب وتفادي
Lines of responsibility
and accountability
should be clearly defined
المسؤولية والمساءلة
Research should be
conducted with integrity and transparency
وينبغي إجراء البحوث بنزاهة
وشفافية
Research should aim to
maximize benefit for
individuals and society and
minimize risk and harm
تحقيق أقصى فائدة لألفراد
والمجتمع
The rights and dignity of
individuals and groups should be respected
وينبغي احترام حقوق وكرامة
األفراد والجماعات
The independence
of research should be
maintained, and where conflicts of interest can
not be avoided, they should be explicit. وينبغيالحفاظ على
استقاللية البحوث
االلتزامات األخالقية
FCI-Cairo University, Saturday 20 January 2018
Data: The world’s most valuable resource is no longer oil, but data
FCI-Cairo University, Saturday 20 January 2018
Your data can take the form of:
What is your research
data type?
Documents (text, Word), spreadsheets
Laboratory notebooks, diaries
Questionnaires, transcripts, codebooks
Audiotapes, videotapes, photographs, films
Test responses
Slides, artifacts, specimens, samples
A collection of digital objects acquired and generated during the process of research
Data files
Database contents (video, audio, text, images)
Models, algorithms, scripts
FCI-Cairo University, Saturday 20 January 2018
Data protection and ethics
Researchers need to maintain high ethical
standards and adhere to data protection
laws when obtaining data from people via
questionnaires, interviews, etc. If you are
undertaking such research you have a duty
to ensure that any data gathered and
shared is handled correctly and in
accordance with the law.
FCI-Cairo University, Saturday 20 January 2018
Do I need consent to
share my data? You are expected to obtain informed
consent from those who participate in your
research and for the use of the data you
collect. Participants should be informed of
the following:
purpose of the research
what is involved in participation
benefits and risks
mechanism of withdrawal
data uses – primary research, storing,
processing, reuse, sharing, archiving, etc.
strategies to ensure confidentiality of data
where this is relevant – anonymisation
.access restrictions, etc ,(إخفاء الهوية)
Without consent, opportunities for sharing data with other researchers
can be risky (خطر).
FCI-Cairo University, Saturday 20 January 2018
THE LIFE OF DATA
A dataset has a longer lifespan than the research project that creates it
Data can be used and re-used for
future research, if:
shared managed well properly preserved made available
FCI-Cairo University, Saturday 20 January 2018
DATA LIFECYCLE
Creating Data
Processing Data
Analyzing Data
Preserving Data
Access Data
Re-use Data
-Plan data management (format, storage, etc.)
- Collect data
-Plan consent for sharing
-Metadata
-Enter data, store data, describe data
-- interpret data, produce research output,
publication,
-Migrate data to best format and suitable medium
-Back-up, create metadata and documentation
-Archive data
-- distribute and share data – control access –
establish copyright and promote data
-Follow up research – new research – teach and
learn
FCI-Cairo University, Saturday 20 January 2018
Research Data
There are some simple ways to share your research
data. These ensure you receive credit for your work,
while making your research data accessible, giving your
readers deeper insights and supporting their work.
Research data forms the backbone of your research
article and provides the foundation on which scientific,
technical and medical knowledge is built. As a
researcher, you are increasingly encouraged, or even
mandated, to make your research data available,
accessible, discoverable and usable.
Research data forms the backbone of your research
FCI-Cairo University, Saturday 20 January 2018
The ways to share your research data
Deposit in a specialist data center
or archive or data bank
Submitting to a journal to support
a publication
Deposit in a self-archiving system
or an institutional repository (like
Mendeley Data)
Dissemination via a project or
institutional website
Informal peer-to-peer exchange
Your data can be
shared by:
Each of these ways of sharing data has
advantages and disadvantages: data centers
may not be able to accept all data submitted
to them; institutional repositories may not be
able to afford long-term maintenance of data
or support for more complex research data;
and websites are often ephemeral سريع الزوال
FCI-Cairo University, Saturday 20 January 2018
Deposit data in
Journals
Data in Brief provides a way for researchers to
easily share and reuse each other's datasets by
publishing data articles that:
• Accurately describe your data, and facilitate its
reproduction.
• Make your data, which is often buried in
supplementary material, easier to find.
• Increase the number of visits to related research
articles and data, leading to more citations.
• Open up doors for new collaborations.
The advantages of depositing data with a
specialist data centre include:
Data Centers
Assurance that data meet set quality standards
Long-term preservation of data in standardized accessible data formats, converting formats when needed due to software upgrades or changes
Safe-keeping of data in a secure environment with the ability to control access where required
Regular data back-ups
Online resource discovery of data through data catalogues
Access to data in popular formats
Licensing arrangements to acknowledge data rights
Standardized citation mechanism to acknowledge data ownership
Promotion of data to many users
Monitoring of the secondary usage of data
Management of access to data and user queries on behalf of the data owner
FCI-Cairo University, Saturday 20 January 2018
Making a data-access plan
Is it necessary to make you data accessible? How can I be sure I use data responsibly?
Most funding agencies require you to make
your data accessible in a manner that
maximizes its value, unless you can argue that
this is not necessary or appropriate. Small sets
of experimental data, for example, may not be
of general value to other researchers. There
could be very specific sensitivities about data
on vulnerable populations, which for some
reason cannot be made satisfactorily safe
through statistical disclosure risk controls but
these will be exceptional situations. The case
for your approach to data access should be
carefully set out for reviewers at the grant
application stage.
Ensure that your data access agreements specify
exactly what acknowledgment you would want
to see in any publications arising from
secondary research using your data; make
absolutely clear any restrictions on the topics
that can be investigated and the timing of any
resultant publications
https://wellcome.ac.uk/sites/default/files/how-to-share-your-research-data-eagda-nov15.pdf
كيف يمكنني التأكد من استخدام البيانات بشكل مسؤول؟
يشجع البحث العلمي والمناقشة
يشجع االبتكار واستخدامات البيانات الجديدة المحتملة يؤدي إلى التعاون الجديد بين مستخدمي البيانات ومنشئي البيانات
تعظيم الشفافية والمساءلة التدقيق في نتائج البحوث
يشجع على تحسين أساليب البحث والتحقق منها
يقلل من تكلفة تكرار جمع البيانات يزيد من تأثير البحوث وضوحها
يعزز البحث الذي خلق البيانات ونتائجها يمكن أن توفر االئتمان المباشر للباحث كمخرجات البحوث في حد ذاتها
يوفر موارد مهمة للتعليم والتدريب
WHY SHARE RESEARCH DATA FCI-Cairo University, Saturday 20 January 2018
Data Protection Act If data e.g. Anonymized ( مجهولة
then the Act will not (المصدر
apply as this no longer
constitutes ‘personal data’.
Applies only to personal data
Not to all research data
Not to all confidential data
Personal data;
Relate to a living individual
The individual can be identified from those data
Includes any expression of opinion about the individual
FCI-Cairo University, Saturday 20 January 2018
What is copyright, who owns it and how
long does it last?
Copyright is an intellectual property right assigned automatically to the creator. It prevents unauthorized copying and publishing of an original work. Copyright applies to research data and plays a role when creating, sharing and reusing data.
حقوق الطبع والنشر هي حقوق ملكية فكرية ويمنع . يتم تعيينها تلقائيا إلى منشئ المحتوى
. النسخ غير المصرح به ونشر عمل أصليتنطبق حقوق الطبع والنشر على بيانات البحث وتلعب دورا عند إنشاء البيانات ومشاركتها .وإعادة استخدامها
FCI-Cairo University, Saturday 20 January 2018
Hippocratic oath قسم ابوقراط
FCI-Cairo University, Saturday 20 January 2018
Data ابعد عن البيانات الشخصية
But
Consent is much better and professional
Paper
?
Personal data (PD) is any
data about person
Person Identifiable Data (PID) is any information which identifies an individual e.g. name, photograph, applicant or employee number.
Sensitive personal data is personal data relating to the individual e.g. race or ethnic origin, political opinion, religious beliefs, physical or mental health, trade union membership, sexual life or criminal activities.
Special conditions apply to the processing of sensitive personal data, including an obligation to obtain the explicit consent of the individual.
PID • name
• photograph
Sensitive personal
data
• political opinion
• physical or mental health
FCI-Cairo University, Saturday 20 January 2018
Data Protection isn’t a choice,
it’s the law
The Egyptian Data Protection Act
2017
The confidentiality of patient records forms part
of the ancient Hippocratic oath ابوقراط قسم , and
is central to the ethical tradition of medicine and
health care.
Confidentiality involves a set of rules or a
promise that limits access or places restrictions
on certain types of information.
A healthcare worker shares confidential information with someone else who is, or is about to,
provide the patient directly with healthcare to make sure they get the best possible treatment. They
only share information that is relevant to their care in that instance, and with consent.
Privacy law refers to the laws
that deal with regulating,
storing, and using of personally
identifiable information of
individuals, which can be
collected by governments,
public or private organizations,
or by other individuals.
• Communication privacy laws
• Financial privacy laws
• Health privacy laws
• Information privacy laws
• Online privacy laws
Privacy law type
Data privacy is the relationship between the
collection and dissemination of data, technology,
the public expectation of privacy, and
the legal and political issues surrounding them.
Data Collection
Dissemination
technology
public expectation of privacy,
Privacy concerns ( (مخاوف exist wherever personally identifiable information or other sensitive
information is collected, stored, used, and finally destroyed or deleted – in digital form or otherwise
Security and confidentiality of PD
Keep it safe
Don’t give someone’s patients secrets away
Don’t let someone
else have it
*Avoid giving PID away:
Don’t send PID using internal envelops because they could easily go to the wrong person
if previous recipients are not exceeded
FCI-Cairo University, Saturday 20 January 2018
Why?
People may not wish for their medical records
to be revealed to others ○ Affect their insurance coverage's or employment
○ They do not want others to know any medical
conditions or treatments that would confound (إرباك) themselves.
○ Disclosing medical data could also reveal other details
about one's personal life.
There are three major categories of medical
privacy:
○ Informational (the degree of control over personal
information), درجة السيطرة على المعلومات الشخصية
○ physical (the degree of physical inaccessibility to others),
درجة عدم إمكانية الوصول المادي لآلخرين
○ Psychological (the extent to which the doctor respects
patients’ cultural beliefs, inner thoughts, values, feelings,
and religious practices and allows them to make personal
decisions). ،مدى احترام الطبيب المعتقدات الثقافية للمرضى
واألفكار الداخلية، والقيم ، والمشاعر، والممارسات الدينية
FCI-Cairo University, Saturday 20 January 2018
Terminologies
“Processing" means any operation or set of
operations which is performed on the data wholly or
partly by automatic means, or otherwise than by
automatic means, and includes -
collecting, organizing or altering the data;
retrieving, consulting, using, storing or
adapting the data;
disclosing the data by transmitting,
disseminating or otherwise making it available;
or
aligning, combining, blocking, erasing or
destroying the data;
data
Processing
collect disclose dissemination
storing deleting consulting Data processing is any action taken with personal data
including the collection, use, disclosure, destruction and holding
of data.
A data subject: The subject of the data is the individual (e.g.
Patient) who is the subject of the personal data.
FCI-Cairo University, Saturday 20 January 2018
Handling personal data The Data Protection Act covers personal data
where specific information about a named patient
may be readily found within:
– Computer system
– Manual filing systems, where data is stored under topic headings or folders where data is stored within file dividers.
– Documents which contain personal data but are not filed
Particular care should be taken in handling
sensitive personal data
Other information which should be handled with
care includes next of kinsman details االقارب, bank
details or other financial information.
FCI-Cairo University, Saturday 20 January 2018
Data Protection Act 2017
The Egyptian Data Protection Act has two aspects:
– Giving people the ‘right to know’ what information organizations hold about them.
– Providing a framework for organization handling personal data.
The main purpose of data protection legislation is to protect individuals against possible تشريع
misuse of personal data information about them, held by others.
The Act is depend on eight straightforward, common-sense principles.
Right to know
framework
Act
FCI-Cairo University, Saturday 20 January 2018
Data Protection Principles
The eight principles require that personal data is:
1. Fairly and lawfully processed.
2. Processed for limited purposes.
3. Adequate كافية , relevant مرتبطة and not
excessive غير مفرطة .
4. Accurate and up to date.
5. Not kept for longer than necessary.
6. Processed in line with the rights of
individuals.
7. Secure.
8. Not transferred to other countries without
adequate protection.
FCI-Cairo University, Saturday 20 January 2018
Can I disclose patient data to others
for research or statistical purposes?
You may disclose patient data to
others for research or statistical
purpose , from which individual
patients cannot be identified.
Ideally, you should inform patients
in advance of such uses of their
personal data. If you wish to pass
on personal data, including
identifying details, you will need to
obtain patient consent in
advance.
FCI-Cairo University, Saturday 20 January 2018
FCI-Cairo University, Saturday 20 January 2018
Egyptian Data Protection Act
القانون المصرى لحماية البيانات
FCI-Cairo University, Saturday 20 January 2018
FCI-Cairo University, Saturday 20 January 2018
FCI-Cairo University, Saturday 20 January 2018
FCI-Cairo University, Saturday 20 January 2018
Case (1) what is the problem and how we can solve it
Data
ow
ner
Collaborator
publication
Data
Publication
without the
data owner
?
FCI-Cairo University, Saturday 20 January 2018
Case (2) Who is the owner of the data?
Idea owner
collect
collect
collect
FCI-Cairo University, Saturday 20 January 2018
FCI-Cairo University, Saturday 20 January 2018
To Share or not to Share?
2017وسام العلوم والفنون من الطبقة االولى
Thanks