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Epi Wit & Wisdom Articles
Ethics Discussed at
International Workshop on Ethics, Health Policy and Epidemiology
Approximately 80 epidemiologists
and other colleagues from 25 countries attended a workshop sandwiched
between the recent meetings of the American College of Epidemiology
and the International Epidemiological Association in Los Angeles in
August. The workshop was attended by representatives of the Council
for International Organizations of Medical Sciences (CIOMS), an arm of
the World Health Organization (WHO), which has been asked by its
parent organization to develop proposed International Guidelines for
Epidemiological Practice and Research.
This WHO request was prompted by
the Global Program on AIDS which has had to confront such questions
as: Can you do seroprevalence studies?; Can data be disassociated from
the individual?; and Can you do tests on samples without consent? The
AIDS program “has probed the limits of conventional ethics,” according
to Bernard Dickens a University of Toronto law professor and CIOMS
representative.
Previous documents on ethics
such as those developed at Nuremberg and Helsinki have focused on
ethics as it relates to individuals. The AIDS problems have
highlighted the need for ethics guidelines focusing on the rights of
groups and what constitutes ethical behavior from a public health
perspective. A CIOMS working group chaired by Jack Bryant from Aga
Kahn University in Karachi is scheduled to meet in early November to
tackle these issues.
The workshop in August was meant
to provide useful information for the CIOMS exercise by allowing CIOMS
representatives to hear first hand what are the concerns and
experiences of working epidemiologists from the field. The workshop
discussions were focused on four broad topics--surveillance, data
ownership and conflicts of interest, moral obligations of
epidemiologists, and guidelines on ethics for epidemiologists.
Data Access
The session on surveillance
included eight different speakers and several points were made during
the presentations and discussion period. Dr. Westrin from Sweden
expressed concern about the growing trend in Europe to restrict access
to data for confidentiality reasons. He cited examples of long term
prospective studies being terminated, case registers being closed
down, and increasing refusals in surveys to illustrate how the concern
over privacy protection is creating “heavy losses to society for
public health.” Dr. Westrin argued for ethical guidelines as a
countermeasure which could help to get improved legal provisions.
Rigid Rules Should Be Avoided
Another theme to emerge during
the surveillance discussions was that the universality of ethical
principles and the principles of human rights must always be upheld
and should not be compromised.
Dr. Osuntokun from Nigeria was
insistent on this point. In summarizing the session, the chairman
noted that although prima facie principles can apply universally,
individual interpretations will lead to different answers. He argued
against rigid rules.
The session on data ownership
and conflicts of interest included a presentation by David Lilienfeld
who cited a court case where guarantees of confidentiality could not
be sustained. He urged epidemiologists not to “overpromise on
confidentiality.”
The session was dominated by the
presentations and discussion of the fenoterol controversy. A measure
of how important this controversy is viewed by epidemiologists
struggling to better understand ethical issues was the analogy drawn
by Paul Stolley, chairman of the session, in his summary remarks. Dr.
Stolley recalled the saying about medical training that--if you know
syphilis, you know medicine. Likewise, he said, “if you know fenoterol,
you know ethics.”
During the fenoterol discussion
the key issue debated was the conflict between the desire of the
epidemiologist to seek the “truth” about the relationship between a
disease and a risk factor and the desire to recommend taking
preventive action when the evidence is “sufficient” to justify taking
action. Very often the desire for more data delays action. The group
discussed when is enough really enough.
On Inference
A third session on moral
obligations of epidemiologists included a presentation by John Bailar
on scientific honesty. He argued that drawing inferences is the
crucial activity in the scientific method and that whatever interferes
with inference is what should be considered unethical. For example, he
cited failure to tell about soft spots in data as one way of
misleading without actually lying. He called the protection of
inference the first priority in any discussion of ethics.
During the discussion period on
moral obligations, there was a call for more epidemiologic work to be
done on poor populations, and questions were raised about how the
profession is serving the principles of justice and equity.
The final session on the third
day included presentations on ethics guidelines including an overview
of the work already accomplished in this area by other professional
societies and an overview of the case for and against guidelines.
Colin Soskolne argued for epidemiologists to define their core values
before going on to try to elucidate guidelines. He asked such
questions as: What do epidemiologists aspire towards? What does the
profession stand for? What does the profession intend to promote?
Guidelines Are Signposts
One point frequently mentioned
by several participants during the three-day workshop was the need not
to view the ethical guidelines as a substitute for discussion of the
dilemmas encountered in the practice of epidemiology. Many persons
repeated the view that the process of considering ethical issues was
perhaps more important than any particular product or outcome that
will emerge at any given point in time. In this context, ethical
guidelines are seen primarily as signposts on an unending journey
exploring ethical issues. The challenge for epidemiologists is to find
a mechanism which can effectively engage the profession in this
ongoing process.
Published July 1990 v
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