Ethical Dilemmas for EHealth
David Zitner
Director Medical Informatics
Dalhousie University
Kimberly Tomasson
Ethicist, University of Victoria
E-Health
Benefits or ethical morass?
“Holding the promise of
beneficence, information
technologies are purported to
increase access, improve quality,
and decrease the costs of care.
Aspects of these technologies,
however, create conflicts with the
ethical principles of autonomy,
fidelity, and justice.”
Apparent Ethical Dilemmas
Impede Progress!
Framing ethical dilemmas differently
leads to different conclusions
An understanding of the various ways
to frame ethical dilemmas helps
resolve them, and surprisingly
will increase the speed of adoption of
worthwhile information technology
E-Health Holds Promise
for Good

Barriers
– Privacy
– Security
– Deontological views

Personal Information is a public good for
public benefit?
– Utilitarian

Appropriate personal information is a public
good for public benefit?
Developing a Course for
Technically Advanced HI
Students

When does attending to a particular
ethical value produce a result which
is bizarre, or inappropriate or fails to
meet needs of one or another
constituency?
Perspectives



Utilitarian orientations focus on trying to
achieve the greatest amount of good for the
greatest number of people
Deontological perspectives view ethical
issues from a right-duty perspective and
attempt to resolve moral conflict by
balancing competing interests. (Tommason, U.Vic)
Sometimes these views conflict
Failing to address ethical
conflict leads to paralysis


Caring for patients vs. caring for
community-Informed consent!
Are duties to individual patient or to
community? What information should
be aggregated? Should we defer
implementing EMR’s because some are
fearful that the information will be
misused? Is the question philosophical
(deontological) or empirical
(utilitarian)
Dilemmas and
Predicaments


Parentalism vs. Autonomy
Adequate information about
– Access and results can lead to anxiety
– Access and results is necessary for
personal choice.
Public Health Issues



Disease surveillance
Health Promotion
Treating predilictions
– Certain information will benefit some and
clearly harm others
Constituency Views
Where is the Obligation?
Public
 Patients
 Health Services Administrators
–Provider Organizations
 Policy Makers
 Providers

Sometimes doing “right”
doesn’t seem to fit with a
utilitarian model
– $300,000 for Fabry’s Disease

Insurance cost = $6.00/year per person if 20
people in Nova Scotia need the drug
– The cost of paying for this represents only a
small fraction of N.S. drug costs per person
 $6/$457.56
= 1.3%
Should we pay for expensive
drugs if they are useful?


Cost of covering Fabry’s disease
represents only 1.3% of total drug
costs (possibly less).
Is this compatible therefore with
both a deontological model and a
utilitarian model?
Looking for Scarcity but
Finding abundance?
– 1993-1998 12% increase in
spending on antidepressants yet
some drug manufacturer’s state the
drugs aren’t effective.
– How IT and Tracking will help us
build on abundance.
Contemporary Issues




Line ups- few for things we all can normally afford
Longer for expensive procedures
Payment issues
– Is there a benefit to beneficiaries of medicare
contributing when they receive service (As
Tommy Douglas, Romanow and Kirby all
suggest). How?
– Or is health care a “right” which everyone must
get free of cost regardless of consequences on
other community spending.
What if this means we are all subject to
illegible scrawls on scraps of paper?
Health care cooperatives
(user pay) to adopt
technology


Will cooperatives lead to tears about
tiers?
Should people be able to pay for
technologies that governments only
provide to selected practices?
Privacy vs. Informed
Consent



People have a right to privacy
People also have a right to receive the
information they need for informed consent
Conflict between access to information
needed for informed consent, and ability to
prevent others from gaining access to
personal information needed for
aggregation
Privacy vs. Informed
Consent

Deontological
– Responsibility of all to share for public good

Utilitarian
– Everyone benefits if information about the
results of care are readily available

THEREFORE, Information gathered for one
purpose should be available for use for
other purposes with appropriate safeguards
for confidentiality.
Benevolent Deception?
Percival Med Ethics 1847

Deontological
– Absolute duty to tell the truth

Utilitarian
– “Boy who cried wolf”

Both perspectives produce same
result. Clinicians should never deceive
patients.
Ethical dilemma 1
Home Care(Xiamin Lou)

What should caregivers do when there is
conflict
with
patient’s
autonomy
(selfdetermination,
advance
directives)
and
beneficence?
For most common instance: On one hand, patients
may refuse treatment even though it is reasonable
and would be beneficial; on the other hand, patients
and families may demand services that are not
required or maybe harmful to them.
Dilemmas and
Predicaments
Solutions?
Is this an appropriate discourse for informatics
students?
What if there are no clear solutions does that
mean that anything goes? Or do we become
paralyzed?
Are there choice rules based on deontology?
On utilitarian principles?
COMMENTS?
Kimberly Tomasson

An ethical experts approach

Panel discussion and audience participation


How do we ethically overcome apparent
barriers to progress?
Are we doomed?