Week 4 – Ethics in

Research with
Marginalized
Populations: January
29, 2024
The Perfect Study
- A perfect study is always most desirable
o Perfect studies are almost impossible because of several issues & challenges
- One of the most important reasons for the inability to achieve a perfect study is research ethics
- Research Ethics: Principles designed to govern the practices of researchers & to assure
accountability
o When conducting research on human participants, many factors need to be considered to
ensure privacy, no harm, & in some case, anonymity

Common Ethical Principles

- Ethical standards
o Guidelines developed to lead & direct research so that little or no harm occurs to research
subjects (and researchers)
- Every organized group has ethical standards: Doctors, attorneys, accountants, bankers, etc.
o Usually policies & code of ethics govern these occupational practices
- Academy of Criminal Justice Sciences (ACJS)
o Provides a list of ethical research guidelines to follow
o Researchers should adhere to the ethical guidelines
 Ethics Review Boards
- These bodies are commonly known as university research ethics boards
o These may also be called institutional Review Boards
- Generally, ethics review boards are created to oversee that ethical standards are ensured, and
necessary steps are taken to reduce the risk to research participants
- Part of the review board approval process requires submitting the complete intent of the research
prior to actually beginning the study
- Ethics review boards protect research participants from being harmed & to conform with other
ethical standards
- Many research abuses have occurred in health & medical research
o E.g., Nazi doctors & experiments, prison experiments
o These issues have strengthened the need for ethics boards while at the same time limiting
& posing challenges for the ideal perfect study
- Belmont Report outlines 3 major ethical principles for studies involving human subjects
o Respect for Persons: Treating persons as autonomous agents & protecting those with
diminished autonomy
o Beneficence: Minimizing possible harms while maximizing benefits
o Justice: Distributing benefits & risks of research fairly

Ethical Guidelines
- There are several ethical guidelines that are part of the research process
o These include: No harm to participants, informed consent & voluntary participation,
anonymity & confidentiality, deceiving subjects, & analysis & reporting
- No harm to participants
o Researchers need to take necessary steps to reduce the possibility of harm to their
research participants
- Harm can take many forms
o Types of harm include physical, emotional, psychological, & financial

No Harm to Participants
- Emotional/Psychological Harm: Participants asked to talk about a traumatic experience and
reveal them to researchers may be at risk of emotional harm
- Physical Harm: This is difficult to measure but certain questions or scenarios to 1 person could
put another individual, living under different circumstances, at great risk of harm
- Financial Harm: Can come in many forms – Participants' employment being put at risk,
possibility of abandonment by family members
- Legal Harm: Need to be mindful of the information being given & whether it may pose legal
ramifications for the participant
 Informed Consent & Voluntary
Participation
- Most universities require a consent form for research purposes involving human participants
o Signed & written consent may not always be feasible or possible
- Informed Consent: Informing potential subjects about research participation (Benefits & risks) &
securing consent before the study begins
- Voluntary Participation: Every participant has the right to refuse to be a part of a research study
o Participants must agree to participate
- Coercion can present itself in many ways
o 1 area that must be balanced is compensation (E.g., Paying participants to be involved in
the research)

Deceiving Subjects
- Deceiving subjects is the practice of tricking or misleading a subject for the purpose of research
o Researchers must inform participants of the nature, purpose, & intent of the study
- This can pose problems for some research
o Does letting participants know they are being studied, and for what purpose, potentially
change their behaviour or responses?
- Resolving these issues (Ethically) may involve shifting the parameters of the study

Analysis & Reporting

- It is unethical to manipulate, edit, or delete any data collected during the process
o Researchers should never remove or change responses that do not fit their ideas of what
is right, moral, or correct
- Ethical violations can occur at the data entry stage (Intentionally or unintentionally)
- Data entry for qualitative data may be challenging & time-consuming
o Can be difficult to interpret
o It is easy to ‘massage’ the data to meet the researcher goals

Ethical Reminders
- The presence of the researcher has the potential to influence data collection
o The demographic characteristics & physical presence of the researcher can impact a
study, especially for qualitative research
- The gender, race, cultural background, socioeconomic status, or personal characteristics of
interviewers can influence a study
o Researchers cannot alter their demographics, but if these issues are present in the study,
the researcher must acknowledge them in the limitation's sections of the paper
- Researchers will face some type of ethical dilemma throughout their research processes &
journeys
o Best practice is to prepare for the ethical issues and be ready to adapt if and when any
arise during a project

Ethical Issues with Marginalized

Populations
- Early experiments on prisoners
o Occurred but uncommon
o Many experiments with prisoners involved questionable medical procedures
- Second World War
o Medical experiments on prisoners begins to rise
o Malaria study involving 400+ prisoners in Illinois
- Postwar & 1960s Experiments
o Prisoners enlisted in several clinical studies
- End of Prisoner Experimentation
o Legislation introduced in the 70s to limit experiments with prisoners
o Tuskegee Syphilis Study was a catalyst for these changes to honour informed consent of
participants

Tuskegee Syphilis Study

- United States Public Health Service conducted the study to record the natural history of syphilis
- Initially involved 600 black men – 399 with syphilis, 201 who were not infected
o Participants’ informed consent was not collected
o Researchers told the mem they were being treated for ‘bad blood’
o The men received free medical exams, free meals, & burial insurance
- The participants were not offered treatment (E.g., Penicillin)
- The study ended because its unethical nature was reported by the media in 1972(40 years after it
started)
Research Ethics with Marginalized
Populations
- Access to marginalized or vulnerable populations may be difficult for researchers
o Many barriers exist that may prevent access
o E.g., Research on prisoners: prisoners must provide consent but also need approval by
CSC (Correctional Service of Canada)
- Confidentiality must be maintained throughout the entire research process
o Responsible for removing any identifying info
- Establishing a trusting relationship can be challenging
o If doing research on prisoners, one must gain their trust but also from prison officers &
administrators
- Considering harms to participants
o Researchers are responsible for ensuring participants have access to support services
o Certain topics & discussions can trigger psychological & emotional trauma which can
significantly impact participants
o Researchers must be aware of this possibility and have on-hand info & referrals for
support, counselling, & treatment
o May also provide this info at the need of the interview even if there are no signs of harm
- Maintaining personal safety & well-being
o Researchers may also be put in precarious situations with certain populations (E.g.,
Violent individuals) and must be cognizant of their own personal safety
o Must prepare & plan for these environments
o Must also be aware of person psychological & emotional harm from interviewing
marginalized populations
- Conducting research with vulnerable populations is a major challenge
- Canadian research ethics governed by the Tri-Council Policy Statement (TCPS2)
- Some people’s physical, cognitive, or mental health circumstances can raise challenges for their
involvement in research
o Potential diminished voluntary consent
- Physical or mental status does not completely determine vulnerability
o Cultural, social, & economic circumstances may also diminish people’s ability to
safeguard their interests in studies
- Vulnerability is not an inherent quality of an individual or group
o It is generated by circumstantial & structural barriers
- Research participants may experience different degrees or types of vulnerability & at different
times
- Researchers need to be familiar with the varying circumstances of prospective participants,
groups, or communities so they can prepare for & anticipate their respective needs that may arise
in the context of the research
- Informed consent, respect for persons, prevention of harm, promotion of welfare, & fair
distribution of research are widely accepted as primary ethical principles of responsible research
- Researchers need to ensure that individuals, groups, and communities whose situations may
render them vulnerable are not unfairly excluded from research opportunities
o E.g., Women, elderly, those who lack decision-making capacity
- Inclusion of people from different demographic & socioeconomic backgrounds is important & it
helps to ensure that treatments frequently given to population in these institutions are effective
and safe
- Researchers need to be familiar with the varying circumstances of prospective participants,
groups, or communities so they can prepare for and anticipate their respective needs that may
arise in the context of the research
- When involving marginalized populations in research, the researcher(s) should provide special
protections or consideration