Sharing scientific data ethics and consent

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
‫لعام‬ ‫المصرية‬ ‫البيانات‬ ‫حماية‬ ‫لقانون‬ ‫التنفيذية‬ ‫واللوائح‬ ‫القواعد‬2017
‫كلية‬
‫الحاسبات‬
‫والمعلومات‬
By Professor Aboul Ella Hassanien
‫الموافق‬ ‫السبت‬
20‫يناير‬2018
‫الساعة‬11
‫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
***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 casesData are the infrastructure of science.

Ethical obligations
‫ينبغي‬‫أن‬‫تهدف‬‫البحوث‬‫إلى‬
‫تحقيق‬‫أقصى‬‫فائدة‬‫لألفراد‬
‫والمجتمع‬‫والبشرية‬‫وتقليل‬
‫المخاطر‬‫واألضرار‬‫وينبغي‬
‫احترام‬‫حقوق‬‫وكرامة‬‫األفراد‬
‫والجماعات‬‫وينبغي‬‫أن‬‫تكون‬
‫المشاركة‬‫المجتمعية‬‫فاعلة‬
‫ومؤثرة‬‫وينبغي‬‫إجراء‬
‫البحوث‬‫بنزاهة‬‫وشفافية‬‫و‬
‫تحديد‬‫خطوط‬‫المسؤولية‬
‫والمساءلة‬‫بوضوح‬‫وينبغي‬
‫الحفاظ‬‫على‬‫استقاللية‬،‫البحوث‬
‫وتفادي‬‫تضارب‬‫المصالح‬
Lines of
responsibility
and
accountability
should be
clearly defined
‫المسؤولية‬
‫والمساءلة‬
Research
should be
conducted with
integrity and
transparency
‫إجراء‬ ‫وينبغي‬
‫بنزاهة‬ ‫البحوث‬
‫وشفافية‬
Research
should aim to
maximize
benefit for
individuals and
society and
minimize risk
and harm
‫أقصى‬ ‫تحقيق‬
‫لألفراد‬ ‫فائدة‬
‫والمجتمع‬
The rights and
dignity of
individuals and
groups should
be respected
‫احترام‬ ‫وينبغي‬
‫وكرامة‬ ‫حقوق‬
‫والجماعات‬ ‫األفراد‬
The
independence
of research
should be
maintained, and
where conflicts
of interest can
not be avoided,
they should be
explicit. ‫وينبغي‬
‫على‬ ‫الحفاظ‬
‫البحوث‬ ‫استقاللية‬
‫األخالقية‬ ‫االلتزامات‬

Data: The world’s most valuable resource is no longer oil, but data

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

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.

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
(‫الهوية‬ ‫,)إخفاء‬ access restrictions, etc.
Without consent, opportunities for sharing data with other researchers
can be risky (‫.)خطر‬

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

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

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

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

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

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
‫مسؤول؟‬ ‫بشكل‬ ‫البيانات‬ ‫استخدام‬ ‫من‬ ‫التأكد‬ ‫يمكنني‬ ‫كيف‬

‫والمناقشة‬ ‫العلمي‬ ‫البحث‬ ‫يشجع‬
‫المحتملة‬ ‫الجديدة‬ ‫البيانات‬ ‫واستخدامات‬ ‫االبتكار‬ ‫يشجع‬
‫البيانات‬ ‫ومنشئي‬ ‫البيانات‬ ‫مستخدمي‬ ‫بين‬ ‫الجديد‬ ‫التعاون‬ ‫إلى‬ ‫يؤدي‬
‫والمساءلة‬ ‫الشفافية‬ ‫تعظيم‬
‫البحوث‬ ‫نتائج‬ ‫في‬ ‫التدقيق‬
‫منها‬ ‫والتحقق‬ ‫البحث‬ ‫أساليب‬ ‫تحسين‬ ‫على‬ ‫يشجع‬
‫البيانات‬ ‫جمع‬ ‫تكرار‬ ‫تكلفة‬ ‫من‬ ‫يقلل‬
‫وضوحها‬ ‫البحوث‬ ‫تأثير‬ ‫من‬ ‫يزيد‬
‫ونتائجها‬ ‫البيانات‬ ‫خلق‬ ‫الذي‬ ‫البحث‬ ‫يعزز‬
‫ذاتها‬ ‫حد‬ ‫في‬ ‫البحوث‬ ‫كمخرجات‬ ‫للباحث‬ ‫المباشر‬ ‫االئتمان‬ ‫توفر‬ ‫أن‬ ‫يمكن‬
‫والتدريب‬ ‫للتعليم‬ ‫مهمة‬ ‫موارد‬ ‫يوفر‬
WHY SHARE RESEARCH DATA FCI-Cairo University, Saturday 20 January 2018

Data Protection Act
 If data e.g. Anonymized ( ‫مجهولة‬
‫)المصدر‬ then the Act will not
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

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.
 ‫فكرية‬ ‫ملكية‬ ‫حقوق‬ ‫هي‬ ‫والنشر‬ ‫الطبع‬ ‫حقوق‬
‫المحتوى‬ ‫منشئ‬ ‫إلى‬ ‫تلقائيا‬ ‫تعيينها‬ ‫يتم‬.‫ويمنع‬
‫أصلي‬ ‫عمل‬ ‫ونشر‬ ‫به‬ ‫المصرح‬ ‫غير‬ ‫النسخ‬.
‫البحث‬ ‫بيانات‬ ‫على‬ ‫والنشر‬ ‫الطبع‬ ‫حقوق‬ ‫تنطبق‬
‫ومشاركتها‬ ‫البيانات‬ ‫إنشاء‬ ‫عند‬ ‫دورا‬ ‫وتلعب‬
‫استخدامها‬ ‫وإعادة‬.

Hippocratic oath ‫ابوقراط‬ ‫قسم‬

Data
‫الشخصية‬ ‫البيانات‬ ‫عن‬ ‫ابعد‬
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

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 ‫قسم‬‫ابوقراط‬ , 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

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), ‫الشخصية‬ ‫المعلومات‬ ‫على‬ ‫السيطرة‬ ‫درجة‬
○ physical (the degree of physical inaccessibility to others),
‫لآلخرين‬ ‫المادي‬ ‫الوصول‬ ‫إمكانية‬ ‫عدم‬ ‫درجة‬
○ 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). ،‫للمرضى‬ ‫الثقافية‬ ‫المعتقدات‬ ‫الطبيب‬ ‫احترام‬ ‫مدى‬
‫الدينية‬ ‫والممارسات‬ ،‫والمشاعر‬ ، ‫والقيم‬ ،‫الداخلية‬ ‫واألفكار‬

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.

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.

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
‫تشريع‬ is to protect individuals against possible
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

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
excessive‫مفرطة‬ ‫غير‬ .
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.

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.

Egyptian Data Protection Act
‫البيانات‬ ‫لحماية‬ ‫المصرى‬ ‫القانون‬

Case (1) what is the problem and how we can solve it
Dataowner
Collaborator
publication
Data
Publication
without the
data owner
?

Case (2) Who is the owner of the data?
Idea owner
collect
collect
collect

‫االولى‬ ‫الطبقة‬ ‫من‬ ‫والفنون‬ ‫العلوم‬ ‫وسام‬2017

Sharing scientific data ethics and consent

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