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
• MISSING
•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
withdraw
• 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
1
• 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
2