Privacy and Confidentiality

(Privasi dan Kerahasiaan)

Dr. Amalia Muhaimin, MSc. (Bioethics)

Department of Bioethics, School of Medicine
Universitas Jenderal Soedirman
 Learning Objectives
• Mahasiswa mampu menjelaskan definisi serta perbedaan
antara privasi (privacy) dan kerahasiaan (confidentiality)

• Mahasiswa mampu menjelaskan pentingnya menghargai

privasi dan kerahasiaan pasien.

• Mahasiswa mampu menjelaskan beberapa pengecualian yang

dapat dibenarkan dalam kaitannya dengan kerahasiaan pasien

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 Topics
1. Definitions of ‘privacy’ and ‘confidentiality’.
2. Reasons for respecting privacy and confidentiality.
3. Duty of healthcare providers to protect the privacy of
patients.
4. Duty of healthcare providers to maintain confidentiality
(aka. ‘professional secrecy’).
5. Which information should be confidential?
6. Justified breaches of confidentiality
7. Special circumstances of research

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 Can you give any example related
to “privacy” in everyday life?

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 1. Definitions
PRIVACY:
 The right to be left alone
 The right of an individual or a group to be free from intrusion
from others
 The right to determine which information about them should
be disclosed to others
 The capacity to be physically alone (solitude), to be free from:
 physical interference
 threat or unwanted touching (assault, battery)
 to avoid being seen or overheard in particular contexts

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 What is “confidentiality”?

How is privacy
related to confidentiality?

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CONFIDENTIALITY:
• An attribute of personal information requiring that it not be
disclosed to others without sufficient reason

• Confidentiality is closely related to privacy, but not identical.

• One observes rules of confidentiality out of respect for, and to

protect and preserve, the privacy of others

• It refers to the obligations of individuals and institutions to

use information under their control appropriately once it has
been disclosed to them.

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 2. Reasons for respecting privacy and confidentiality

a. Individuals ‘own’ their information: it is essential to their

personal integrity.

b. For many people privacy is an essential aspect of their

dignity; invading their privacy is a violation of their dignity.

c. Respect for others requires protecting their privacy and the

confidentiality of information about them.

d. Doctors need patients’ trust!

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 “The new hidden cameras will allow us o see if anyone is
violating our privacy policy by reading someone else’s email”

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• Cases:
• A few weeks after an Orlando woman had her doctor perform
some routine tests, she received a letter from a drug company
promoting a treatment for her high cholesterol. (Orlando
Sentinel, November 30, 1997).

• A 30-year FBI veteran was put on administrative leave when,

without his permission, his pharmacy released information
about his treatment for depression. (Los Angeles Times,
September 1, 1998)

(UC Davis Health System)

http://www.ucdmc.ucdavis.edu/compliance/guidance/privacy
/example.html

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 3. Duty of health care providers to protect the
privacy of patients

 obtain personal information about family, work, and

environment
 obtain information on medical history, lifestyle, habbit

 ask patient’s permission to examine him/her unclothed

 should ensure that an unclothed patient cannot be viewed

by passers-by
 etc…

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 4. Duty of health care providers to maintain
confidentiality

• The duty of maintaining confidentiality (‘professional secrecy’)

has been part of Western medical ethics since Hippocrates

• Preceded the notion that privacy is a right

 What do you think?

• Ethics courses in non-Western countries should discuss the

source of medical confidentiality in their cultures

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 5. Which information should be confidential?

Confidentiality extends to all personal (health)

information, including genetic data

UNESCO International Declaration on Human Genetic Data:

“…all medical data, including genetic data and proteomic
data, regardless of their apparent information content, should
be treated with the same high standards of confidentiality”

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 When can information
be disclosed?

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 6. Justified breaches of confidentiality
a. Sharing information for patient care
• In hospital setting  access to the patient’s chart
• Outside hospital  family members need patient information
to provide care and/or to protect themselves

b. Using interpreters
• An interpreter will need access to information about the
patient; interpreters should be bound to observe
confidentiality

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Justified breaches…

c. Teaching medical students

• Observation & discussion of patients is a necessary part of
medical education; students should be informed of their
obligation to maintain confidentiality

d. Mandatory reporting
 Health care practitioners should be familiar with the law
• Infectious diseases,
• Suspected child abuse,
• Suspected family abuse
 Patients should be informed that their information has to be
reported to the appropriate authorities

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Justified breaches…

e. Serious danger to others

• patient threaten to harm others, by violence /sexual contact
• patient has a transmissible disease such as HIV

f. Genetic information
• Do other individuals with the same genetic makeup (close family
members) have a right to a patient’s genetic information?
• Physicians should consult national regulations/ guidelines

g. With patient or guardian consent

• This should generally be obtained for all breaches of
confidentiality and renders the breach acceptable ethically.

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 7. Special circumstances of research
a. Disclosure of personal health information  requires prior
consent of the research subject;

b. Anonymized information  consent for disclosure? 

refer to national regulations/guidelines, otherwise
international guidelines such as the Declaration of Helsinki

c. Communities and individuals have a right to privacy 

information should be kept confidential, especially when
disclosure may be harmful to the community.

d. Scientific publication should respect confidentiality to the

greatest extent possible  consent is always required
when an research subject can be identified in a publication
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 Case studies

• Your 36-year-old patient has just tested positive for HIV. He

asks that you not inform his wife of the results and claims he
is not ready to tell her yet.

• A 75-year-old woman shows signs of abuse that appears to be

inflicted by her husband. As he is her primary caregiver, she
feels dependent on him and pleads with you not to say
anything to him about it.
• How is this case different from Case 1? How would you handle
this situation?

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 Reference
• UNESCO. Bioethics Core Curriculum. Section 1:
Syllabus. UNESCO 2008. Available at:
http://unesdoc.unesco.org/images/0016/001
636/163613e.pdf

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