Privacy & Confidentiality

Dr Robyna I Khan

Given our modern research

setting, with growing
dependence on computers, the
Internet, and the need for
databases, protection of an
individuals privacy is now one of
the greatest challenges in
research.

A breach of confidentiality
violates a persons rights and
poses a risk of harm to the
research participant, ranging
from social embarrassment and
shame, to stigmatization, and
even damage to social and
economic status, such as loss of
employment and health
insurance.

How do you define privacy?

Privacy refers to how an individual
decides what personal information to
share with others.
What individuals choose to let other
people know about themselves.
Private information can include
thoughts, identifying information, and
even information contained in bodily
tissues and fluids.

How do you define confidentiality?

Confidentiality is an implicit
expectation that privacy will be
protected by those entrusted with
the informationin this case, that
the individuals personal
information will be kept private by
the researcher.

Benefits of Maintaining
Confidentiality
It helps establish trust between the
research participant and the
researcher.
It reduces worry on the part of the
individual.
It maintains the participants dignity.
The participant feels respected.
It gives the participant control and
promotes autonomy.

 A researcher's obligation to protect

confidentiality is higher than a
clinicians since research often does
not provide benefit to the participant
and provides no compelling reason to
become involved in the research.
In almost all situations, research
needs do not trump an individual's
basic privacy rights.
Those involved in designing,
approving, and carrying out research
must determine how to conduct
research that maintains participants
confidentiality.

What Researchers should do

Identify who has access to the data
Identify who is maintaining the
confidentiality of the data
Describe the measures for protecting
the physical security and software
security of the data
Ensure that authentication and
authorization are required for those
who have access to medical data by
providing firewalls, data encryption,
and password protection
A contingency plan for dealing with any
breach of confidentiality

World Medical Association

Declaration of Helsinki
Declares, as a basic human right,
that all medical and personal data
be confidential except:
If disclosure would prevent
serious harm to public health.
By order of a court of law for a
criminal case.

The Belmont Report (1979)

The report sets out three
fundamental ethical principles:
respect for persons, beneficence,
and justice.
Individual privacy and autonomy
are described in the report as
necessary to honor these ethical
principles.

Information

The study objectives.

The procedure/requirements.
Possible risks.
Possible benefits.
Compensation.
Confidentiality.
Withdrawal.