Research Ethics – Van Zuijen & Bos (2022)
Cases of ethical violations in medical studies:
Nazi medical experiments during WWII involved harmful, non-consensual research on
prisoners. Lead to the creation of the Nuremberg Code, which established voluntary
informed consent as a key principle in research ethics.
The Willowbrook Study (1955-1970) involved deliberately infecting mentally disabled
children at Willowbrook State School in New York with the hepatitis virus to study its
transmission and test gamma globulin. Although legal caregivers consented, the children’s
participation was tied to admission to the school, and the information given to parents was
misleading. This later led to a public outcry, resulting in the end of medical experiments on
mentally disabled children.
The Tuskegee Syphilis Study (1930s-1972) involved the unethical study of untreated syphilis
in African American men. Participants were misinformed, not treated with penicillin even
after its discovery, and suffered severe health consequences. It led to the creation of the
Belmont Report on ethical research practices.
The Belmont Report shows three core principles for ethical research:
1. Respect for persons: Protect participant autonomy and ensure full, honest informed
consent.
2. Beneficence: Minimise harm and maximise benefits for participants.
3. Justice: Ensure fair, non-exploitative, and well-considered research procedures.
Cases of ethical violations in social science studies:
Milgram's (obedience study (1963) examined how far people would go to obey authority.
Participants believed they were giving electric shocks to a learner (which were actually fake),
with over half administering lethal-level shocks. The study was criticised for deception and
ethical concerns about participant well-being.
Zimbardo's Stanford Prison Experiment (1971) studied the effects of power, assigning
participants as guards or prisoners in a mock prison. The study was supposed to last 2 weeks
but ended after six days due to harmful behaviour from the “guards” and emotional distress
among “prisoners”. The study faced ethical criticism for the mistreatment of participants,
with investigations revealing that Zimbardo instructed guards to dehumanize prisoners,
violating ethical principles of justice.
Study of a black neighbourhood by Dan Rose: Conducted in Philadelphia, Rose lived in the
community and worked in a local garage, but the community was unaware they were being
observed, and no consent was given.
In 1953, the American Psychological Association (APA) published its "Ethical Principles of
Psychologists and Code of Conduct." Researchers must obtain approval from an Institutional Review
Board (IRB) to publish in an APA journal. Five general ethical principles:
Beneficence: Striving to do good and minimize harm.
Fidelity and responsibility: Maintaining trust and accountability.
Integrity: Ensuring honesty and transparency in research.
Justice: Ensuring fairness and equity in research.
Respect for people’s rights and dignity: Upholding autonomy and privacy.
, The Nethics code provides ethical guidelines for social and behavioural science research in the
Netherlands. It aims to raise ethical awareness and guide evaluations by Institutional Review Boards
(IRBs). Researchers must follow the code but can deviate if they justify their reasons. The Nethics
code is too general for Research Institute for Child Development and Education (RICDE) researchers,
so the ERB created specific guidelines for their common research.
The Nethics code is based on three principles: respect, a fair distribution of benefits and burdens,
and scientific validity. Researchers must submit a research plan focusing on participant wellbeing.
The ERB reviews it using the Nethics code. Without ERB approval, research is not insured and is the
researcher’s personal responsibility.
The effort asked of participants must be in proportion to the expected benefits. Research should
yield new, relevant insights that cannot be gained through less demanding methods. Valid results
require sound methodology, a suitable setting, and qualified supervision.
Participants must be fully informed, give voluntary consent, and can withdraw at any time, even after
data collection.
The informed consent letter should include:
Purpose, goals, and procedures of the research in clear language.
Voluntary participation with the right to withdraw at any time.
Information on privacy protection, data storage, and possible reuse.
Explanation of what happens if incidental findings are discovered, e.g. suicidal thoughts.
Contact details for the researchers and ERB member.
Details on time commitment, compensation, and insurance.
For children under 12, consent must be obtained from a parent or legal guardian, and the child
should be involved. For those aged 12 to 15, both the parent and the child must give consent, unless
parental consent would harm the child, in which case the ERB may allow the study to proceed with
only the child’s consent. From age 16 onward, only the participant’s consent is needed. If a
participant is not mentally competent, informed consent must be obtained from a legal
representative, and the participant should also be asked if possible.
Researchers must document informed consent or justify its absence to the ERB (e.g., in case of
anonymity). Consent must be obtained beforehand, and renewed if the study changes or becomes
more demanding.
Exceptions to active consent:
Deception: Information may be withheld if necessary for research goals, with debriefing
afterward, including full disclosure and the option to withdraw data.
Passive Consent/Inform-only: Used in low-burden research with children, where parents are
informed, and if they do not opt out, the child is included. This procedure can be applied
under special circumstances: when active consent would harm research quality, there is
minimal burden or risk to participants, participants and legal representatives are carefully
informed, the opt-out procedure is easy, and no identifying information is collected.
No-consent: When data is re-analysed for new research goals and participants can't be
contacted, a plan must be submitted to the ERB addressing privacy concerns. However, if it is
expected that many of them would refuse the reanalysis the research could be considered
not ethical.
Cases of ethical violations in medical studies:
Nazi medical experiments during WWII involved harmful, non-consensual research on
prisoners. Lead to the creation of the Nuremberg Code, which established voluntary
informed consent as a key principle in research ethics.
The Willowbrook Study (1955-1970) involved deliberately infecting mentally disabled
children at Willowbrook State School in New York with the hepatitis virus to study its
transmission and test gamma globulin. Although legal caregivers consented, the children’s
participation was tied to admission to the school, and the information given to parents was
misleading. This later led to a public outcry, resulting in the end of medical experiments on
mentally disabled children.
The Tuskegee Syphilis Study (1930s-1972) involved the unethical study of untreated syphilis
in African American men. Participants were misinformed, not treated with penicillin even
after its discovery, and suffered severe health consequences. It led to the creation of the
Belmont Report on ethical research practices.
The Belmont Report shows three core principles for ethical research:
1. Respect for persons: Protect participant autonomy and ensure full, honest informed
consent.
2. Beneficence: Minimise harm and maximise benefits for participants.
3. Justice: Ensure fair, non-exploitative, and well-considered research procedures.
Cases of ethical violations in social science studies:
Milgram's (obedience study (1963) examined how far people would go to obey authority.
Participants believed they were giving electric shocks to a learner (which were actually fake),
with over half administering lethal-level shocks. The study was criticised for deception and
ethical concerns about participant well-being.
Zimbardo's Stanford Prison Experiment (1971) studied the effects of power, assigning
participants as guards or prisoners in a mock prison. The study was supposed to last 2 weeks
but ended after six days due to harmful behaviour from the “guards” and emotional distress
among “prisoners”. The study faced ethical criticism for the mistreatment of participants,
with investigations revealing that Zimbardo instructed guards to dehumanize prisoners,
violating ethical principles of justice.
Study of a black neighbourhood by Dan Rose: Conducted in Philadelphia, Rose lived in the
community and worked in a local garage, but the community was unaware they were being
observed, and no consent was given.
In 1953, the American Psychological Association (APA) published its "Ethical Principles of
Psychologists and Code of Conduct." Researchers must obtain approval from an Institutional Review
Board (IRB) to publish in an APA journal. Five general ethical principles:
Beneficence: Striving to do good and minimize harm.
Fidelity and responsibility: Maintaining trust and accountability.
Integrity: Ensuring honesty and transparency in research.
Justice: Ensuring fairness and equity in research.
Respect for people’s rights and dignity: Upholding autonomy and privacy.
, The Nethics code provides ethical guidelines for social and behavioural science research in the
Netherlands. It aims to raise ethical awareness and guide evaluations by Institutional Review Boards
(IRBs). Researchers must follow the code but can deviate if they justify their reasons. The Nethics
code is too general for Research Institute for Child Development and Education (RICDE) researchers,
so the ERB created specific guidelines for their common research.
The Nethics code is based on three principles: respect, a fair distribution of benefits and burdens,
and scientific validity. Researchers must submit a research plan focusing on participant wellbeing.
The ERB reviews it using the Nethics code. Without ERB approval, research is not insured and is the
researcher’s personal responsibility.
The effort asked of participants must be in proportion to the expected benefits. Research should
yield new, relevant insights that cannot be gained through less demanding methods. Valid results
require sound methodology, a suitable setting, and qualified supervision.
Participants must be fully informed, give voluntary consent, and can withdraw at any time, even after
data collection.
The informed consent letter should include:
Purpose, goals, and procedures of the research in clear language.
Voluntary participation with the right to withdraw at any time.
Information on privacy protection, data storage, and possible reuse.
Explanation of what happens if incidental findings are discovered, e.g. suicidal thoughts.
Contact details for the researchers and ERB member.
Details on time commitment, compensation, and insurance.
For children under 12, consent must be obtained from a parent or legal guardian, and the child
should be involved. For those aged 12 to 15, both the parent and the child must give consent, unless
parental consent would harm the child, in which case the ERB may allow the study to proceed with
only the child’s consent. From age 16 onward, only the participant’s consent is needed. If a
participant is not mentally competent, informed consent must be obtained from a legal
representative, and the participant should also be asked if possible.
Researchers must document informed consent or justify its absence to the ERB (e.g., in case of
anonymity). Consent must be obtained beforehand, and renewed if the study changes or becomes
more demanding.
Exceptions to active consent:
Deception: Information may be withheld if necessary for research goals, with debriefing
afterward, including full disclosure and the option to withdraw data.
Passive Consent/Inform-only: Used in low-burden research with children, where parents are
informed, and if they do not opt out, the child is included. This procedure can be applied
under special circumstances: when active consent would harm research quality, there is
minimal burden or risk to participants, participants and legal representatives are carefully
informed, the opt-out procedure is easy, and no identifying information is collected.
No-consent: When data is re-analysed for new research goals and participants can't be
contacted, a plan must be submitted to the ERB addressing privacy concerns. However, if it is
expected that many of them would refuse the reanalysis the research could be considered
not ethical.
