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: [email protected] &[email protected]

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


***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


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

.access restrictions, etc ,(إخفاء الهوية)

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

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


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


Hippocratic oath قسم ابوقراط


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


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

https://en.wikipedia.org/wiki/Privacy

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), 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


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 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


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.


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

القانون المصرى لحماية البيانات





Case (1) what is the problem and how we can solve it

Data

ow

ner

Collaborator

publication

Data

Publication

without the

data owner

?


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

Idea owner

collect

collect

collect



To Share or not to Share?

2017وسام العلوم والفنون من الطبقة االولى

Thanks

Engineering

Sharing scientific data ethics and consent