Ethical Issues in Qualitative Research

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Ethical Issues in Qualitative Research

• An Introduction

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Why are ethical principles important? Some Famous
Examples

• The Tuskegee Syphilis Study

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(No Transcript)
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Formal apology to surviving participants in the
Tuskegee Study, President Bill Clinton, the
Whitehouse, 1997
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Willowbrook Hepatitis Study
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• 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.

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• 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.

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Willowbrook Consent Form

• gt Willowbrook State Schoolgt Office of the
  Directorgt Staten Island, New York gt gt November
  15, 1958 gt gt Dear_______________ gt gt 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. gt gt 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. gt gt Sincerely, gt gt H. H. Berman, MD
  gt gt Director

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The Nuremburg Code
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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

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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)

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Key considerations (contd)

• 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)

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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.

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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)

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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?

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• 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?

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• 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)

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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)

• 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