ethics of information sharing
TRANSCRIPT
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Information sharing and EthicsDr. Maher D. Fuad Fuad
MAHSA University College
Faculty of medicine
LecturerDepartment of community medicine
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Rights to obtain information.
Screening of information.
Sharing of information.
Moral issues of usage of internet.
Contents
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The concept of information is closely related to
notions of constraint, communication, control, data,form, instruction, knowledge, meaning, mentalstimulus, pattern, perception, and representation.
What is information?
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Individuals.
Records and documents. Books.
Journals and monographs.
Personal diaries.
Newspaper and magazines. Computer data base.
INTERNET.
Source of information
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Why do we share informations ?
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Construction of a complete picture of disease
progression and management of clinical care Includes:
Patient demographics,
Medical and family history.
Drug therapy regimens.Laboratory data and clinical outcome.
Processes of care.
Patient compliance and adherence.
Patient information
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Personal information of a private or sensitive nature;
Information that is not already lawfully in the publicdomain or readily available from another publicsource.
Information that has been shared in circumstances
where the person giving the information couldreasonably expect that it would not be shared withothers.
Confidential information
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7 G O L D E NR U L R E S
1. Remember that the DataProtection Act is not a barrier tosharing information but provides aframework to ensure that personalinformation about living persons isshared appropriately.
2. Be open and honest with theperson (and/or their family whereappropriate) from the outset aboutwhy, what, how and with whom
information will, or could be shared,and seek their agreement, unless itis unsafe or inappropriate to do so.
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3. Seek advice if you are in any doubt, without disclosing the
identity of the person where possible.
4. Share with consent where appropriate and, wherepossible, respect the wishes of those who do not consent to
share confidential information. You may still shareinformation without consent if, in your judgement, that lackof consent can be overridden in the public interest. You willneed to base your judgement on the facts of the case.
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5. Consider safety and well-being: Base your information sharingdecisions on considerations of the safety and well-being of the personand others who may be affected by their actions.
6. Necessary, proportionate, relevant, accurate, timely and secure:Ensure that the information you share is necessary for the purpose forwhich you are sharing it, is shared only with those people who need tohave it, is accurate and up-to-date, is shared in a timely fashion, and is
shared securely.
7. Keep a record of your decision and the reasons for it whether it isto share information or not. If you decide to share, then record whatyou have shared, with whom and for what purpose.
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Is currently considered an important media.
Enables users to interact across the network hasprovided opportunities for retrieval of hypermediainformation in an easy and effective way.
Information systems raises new ethical questions
because they create opportunities for:Intensive social changes, threatening existing distributions
of power, money, rights, and obligations.
New kind of crimes.
The internet
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World wide web (WWW) multimedia capabilities,
An important media to access and acquire informationas well as
Interact using diverse type types of visualrepresentations such as images, maps, diagrams and
graphs which are as easy to implement as textsupported by graphical interface, sound, video,animation and so forth..
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when I took office, only high energy physicists had ever heard ofwhat is called the World Wide Web
Now even my cat has its own page.
Bill Clinton
Former US President
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World Internet Users
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The Internet blurs traditional categories like "professional versus"amateur," "published" versus "unpublished," and "public" versus"private."
Existing rules for the ethical conduct of human subjects research thatrely on these categories are thus difficult to extend to this newmedium.
Health portals are most popular sites visited by users. Exponential growth of health information on Internet
Possibilities of finding unauthenticated, inaccurate, misleading and attimes dangerous information on Internet Ethical Guidelines can ensure that people take full benefit of Internet
to improve their health without risk
Need for Ethical Issues
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Internet Healthcare Coalition
(http://www.ihealthcoalition.org/ethics/code0524.pdf) eHealth Ethics Initiative introduced an International Code
of Ethics for health care sites and services on the Internet.
Hi-Ethics Alliance (www.hiethics .org)
AMA - American Medical Association (www.amaassn.org) HON - Health on the Net Foundation (www.hon.ch)
Guidelines ........ .
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Information about the owner of the site and purpose of thesite should be clearly indicated
Information should be truthful and unbiased
Information should be accurate, easy to understand and up todate
Consent from participants must be obtained before publishingany personal data
Provide meaningful opportunity for users to give feedback tothe site
Copyright notice should be pasted on the site
Ethical issues in disseminatinginformation on the Internet
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Major issues raised by information systems include:
Information rights and obligations.
Property rights and obligations.
Accountability and control.
System quality.
Quality of life.
http://www.govemomet.co.ukllinkAttachments/lnformation sharing guidance for practitioners and managers.pdf
Five moral dimensions of information agehttp://quantifactus.wcupa.edu/mis601/chapter4.ppt#257,
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Collectively, the benefits that flow from responsible sharing ofpersonal information contribute significantly to an increase inopportunity of the patients in getting a better health careservices no matter where they are.
Anyone can go almost anywhere and obtain medicine orhealth advice far from home
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Thank you