Ethical Issues in Qualitative
Research
An Introduction
Why are ethical principles
important? Some Famous Examples
The Tuskegee Syphilis Study
Formal apology to surviving participants
in the Tuskegee Study, President Bill
Clinton, the Whitehouse, 1997
Willowbrook Hepatitis Study
• The Willowbrook State School was an institution for the retarded, as
mentally challenged persons were referred to at that time, on Staten
Island, New York. During the 1950s, Dr. Saul Krugman was the
director of research at Willowbrook.
• He knew that many children there would develop hepatitis because
of overcrowding and other unsanitary conditions. In fact, many
members of the staff developed hepatitis as well. Dr. Krugman also
knew that the virus responsible for hepatitis did not have hosts
outside human beings.
• He was persuaded that these conditions justified research on the
disease in humans. He initiated a project at Willowbrook to study
gamma globulin injections to determine whether they would protect
the children from infection. The injections did seem to have a strong
protective effect.
• Dr. Krugman then admitted new residents of the school to special
quarters and fed them virus samples he had collected from the other
children.
• When protest arose regarding his exposure of these children to
hepatitis virus, Dr. Krugman defended his work. If he had not
infected the children as part of research, they would have developed
hepatitis anyway because of their school's communal housing. This
research, he said, was akin to an experiment in nature, and no level
of improved hygiene would have protected the children. He noted,
too, that he had been given permission from parents to experiment
on their children.
• It is true that children were enrolled with parental consent. A letter
explaining the research was sent to parents whose children were on
a waiting list for admission to Willowbrook. Immediate admission
was the reward for parents who signed the letter; parents who did
not provide consent were not assured of immediate admission. Also,
the letter explained the benefits of a new preventative for the
Hepatitis virus. The letter is reproduced below.
Willowbrook Consent Form
•
> Willowbrook State School
> Office of the Director
> Staten Island, New York
>
> November 15, 1958
>
> Dear_______________:
>
> We are studying the possibility of preventing epidemics of hepatitis on a new
principle. Virus is introduced and gamma globulin given later to some, so that either
no attack or only a mild attack of hepatitis is expected to follow. This may give the
children immunity against this disease for life. We should like to give your child this
new form of prevention with the hope that it will afford protection.
>
> Permission form is enclosed for your consideration. If you wish to have your child
given the benefit of this new preventative, will you so signify by signing the form.
>
> Sincerely,
>
> H. H. Berman, MD
>
> Director
The Nuremburg Code
Overarching Ethical Principles
(Gillis &Jackson, 2002)
Principles of Ethical Research
Respect for person
Beneficence
Justice
Methods for protecting human
participants
Informed consent
Institutional review Boards
Some key considerations in ethical
conduct during the research process
• Comparing ethical principles of all research
with medial ethical principles: Respect for
person, Beneficence, Justice revisited.
• The relational aspect of qualitative research:
Comparing professional codes of conduct with
ethical conduct in qualitative research: a
comparison with the College of Registered
Nurses Professional Boundaries document
(CRNNS, 2002)
Key considerations (cont’d)
• Protection of participants through the
informed consent process favors formalized
interaction between researcher and
participant.
• Strength of qualitative research methods
often lies in the informality of the
communication as well as the iterative nature
of the research process.
• How can we reconcile these two conflicting
dynamics? (Fritz, 2008)
CNA Code of Ethics: Comparing
with Research Ethics
CNA CODE
1. Safe, competent
ethical care
2. Dignity
3. Confidentiality
4. Justice
5. Accountability
6. Quality Practice
Environments
Codes of Research Ethics
1.
2.
3.
4.
5.
6.
College of Registered Nurses
Boundaries Document
Comparing relationship boundaries in:
1. Professional Nursing Relationships
2 Personal Relationships
3. The Research Relationship
(Please use handout: CRRNS boundaries in
Professional Relationships document
(2004)
Applying Ethical Principles: working
through some case examples
1) You want to study adolescent social
interaction during the sharing of a
cafeteria meal.
– Who are the research participants?
– What are the risks?
– How will you minimize the risks?
– Who needs to provide informed consent?
– What are your main ethical concerns?
2) You want to study the social
interaction among university students
when they are preparing for the
BURMAC hockey game.
– Who are the research participants?
– What are the risks?
– How will you minimize the risks?
– Who needs to provide informed consent?
– What are your main ethical concerns?
• The obligation to inform people that they are part of
a research project is universal, no matter what your
methods.
• Always be honest about who you are, what your
research is about, why you want to talk, and what
you will do with the information.
• Depending on your methods, written informed
consent may not always be necessary and may, in
fact, negatively impact the quality of your research.
Always consult the REB for guidance and work with
them to come to mutually agreeable solutions to
protect the participants as well as the integrity of
your research process. (Fritz, 2008)
The Informed Consent Process revisited
(Described in detail using Informed Consent sample circulated in class: An Institutional
Ethnography of Nurses’ Stress in PICU; McGibbon, 2004)
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Study Title
Researcher
Funding Source
Introduction
Purpose of the Study
Study Design
Potential Harms
Potential Benefits
Withdrawal from
Participation
• Costs and
Reimbursements
• Confidentiality
• Research Rights
• Contact Persons
• Participant Consent
• Statement by person
providing information
on the study
• Statement by person
obtaining consent