Lecture 7.doc

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22 Apr 2012
Ethical Considerations in Research on Health and Aging.
1.. Ethical issues Kayser-Jones, J., & Koenig, B. A. (1994).
issues with qualitative or ethnographic research among elderly for all researchers
Principles of ethical research (respect, beneficence, justice)
problem : strong reciprocal bonds b/w researcher and informants
Biomedical Background:
- Beecher listed controversial issues such as willowbrook incident in which mentally retarded children
were injected with hepatitis
-1966 first regulation to protect human subjects (southam injected cancer cells in elderly people
-1974 national research act established President’s commission for protection of human subjects of
biomedical and behaviour research
-all institutions must have institutional review board
Professional Codes of Ethics
- in the late 1960s anthropologists were forced to deal with negative impact of ethnographic work in areas
such as southeast asia, latin america
- in 1971 American anthropological association first adopted professional responsibilities
-codes emphasize researcher’s ethical obligations and raises awareness but does not solve problems
-fundamental principles are not always easily applied to unique fieldwork situations
Ethical Issues in Qualitative Process (IRB)
- in observational research many public settings has no review so:
1) observations are recorded so human subjects can be identified
2) observations recorded could place a risk of criminal or civil liability
3) research deals with sensitive aspects of subject’s behaviour
-observation: invasion of privacy, burdensome for researcher and informants to interrupt and get
permission from each person
-Imp issues for qualitative: informed consent, when to intervene, privacy and confidentiality
Assessing risk vs Benefit
- assessing potential harm to informants and considering methods to minimize or eliminate it
-techniques need to be modified to avoid fatigue since an interview can be harmful for them
Informed Consent
-Key elements: providing info about research, comprehensive info, voluntary participation, freedom to
meaningful social bonds may be developed which makes it hard to withdraw from the project
Decisional Capacity (esp in cognitively impaired elders)
- identified as the ability to comprehend info relevant to decision
- the ability to deliberate about choices according to one’s personal values and goals
- the ability to communicate effectively with others
Privacy and Confidentiality
- indv have control over when and how communication about themselves is given to others, and how the
private info is treated. Anonymity and concealing identity is ideal
Advocacy and Intervention
-some theoriest feel advocacy is important as it is a responsibility
-intervention has big responsibilities of advocacy as well as for other informants in the study
Case- Study (Mrs. Smith, 85 year old)
alzheimers, arthiritis, hypothyroidism
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generally alert with activities but sometimes confused
she suddenly had a sore throat (cant swallow) and a 100 * fever
DNS replied that the family didn’t want mrs smith treated, and wanted her to die
Mrs smith died after 2 hours of intravenous fluids arriving
methods used were : in depth interview, participant observation, and event analysis
Maintaining confidentiality
-was hard but mrs. smith was interviewed earlier and she agreed to any surgery, and trusted her physician
and children
mental status was one of the most imp variables in decision making process. should cognitively impaired
adults be in research?
if people are lonely do they consent to be interviewed because of the social interaction it provides them? if
so, does this violate the principles of voluntary participation?
need to focus on risk-benefit analysis
Dilemna: the tests used for decision capability can cause anguish and be an affront to personal dignity
must look at timing, setting, anxiety, medications, depression, pain etc
interviewers must be trained well, plan well, have good communication with hospital staff, protect
privacy, have short interviews not tiring them
2. Methodologic issues in conducting research on hospitalized older people. Berkman
challenges: illness and severity of patients, intensity and rapid pace of care, multiple procedures, care
needs unable patients to participate in studies
inpatients are now more severly ill and have shorter lengths of stay in the acute hospital
durations of delays and interruptions were recorded for every interview and phone calls necessary
lack of access: due to patient care activities, diagnostic and treatment procedures, delays in transfer from
emergency room, too ill to participate
different proxies made quality of data hard as the patient had different relationships with each and
interview had to be newly required
delays starting and interruptions during interviews were common
30 percent could not hear normal hearing voice, 24 severely ill, 12 percent had pain, coughing, spell,
shortness of breath
There were 2 people with the patient as well as other patients and visitors in the room
Imp to start interview shortly after admission as conditions get worse
Age and health weren’t correlated with
Some may have memory impairments or depression due to stress of hospitalization, and many became
fatigued halfway through
Believed that olders hide their feelings when others present but not studied
In the western culture= we are all embarrassed about getting old
-best way to interact with patients is with humour-best form of medicine
-it is important that we go to the beginning of our research, and make sure research is ethical
- Prof Walsh - institute of health and aging- PHd
Current events:
-half a century ago, there was an unethical study conducted
- Syphilis in gautamala= president barack obama ordered a commission (bio-ethical) to explore whether such a
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