The principle of respect for persons concerns an individual’s right to autonomy or self-determination. People should be empowered to decide what is best for themselves, and be respected for their own choices.
In research involving human subjects, respect for autonomy manifests in the need to obtain consent from subjects. A valid consent should be:
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Fully informed
People should be given all the information that they would need to make the best decision for themselves.
Voluntary
Not coerced (i.e. forced with threats)
Not unduly influenced (i.e. tempted with excessive rewards, or misleading claims of benefit).
Provided by an individual who has capacity
Capacity should be enhanced by presenting information in a way that facilitates an individual's understanding.
When someone is unable to provide consent that satisfies all three criteria above, they are considered vulnerable to exploitation.
Test yourself: Vulnerable or not?
Based on some of the previous case examples, consider whether these subjects could have been vulnerable.
Click on the respective links to refresh your memory about the cases.
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Other than Pierre Curie who self-experimented, all of these individuals could have been vulnerable to exploitation.
James Phipps: Children are considered as a vulnerable group as they are unlikely to have full capacity.
Medical student: Medical students could be vulnerable if they are forced or tempted to undergo experimental procedures to gain academic credit from their lecturers.
Dr Nash: Dr Nash may be vulnerable if he overlooked important study information due to his eagerness to participate in research, or if he was not fully briefed because the researcher assumed he was knowledgeable enough. If Dr Nash is later found to have dementia, his capacity to provide consent may also be questioned.
David: David could have been unduly influenced by the 2000 pounds incentive. As such, the poor, unemployed and homeless are all considered vulnerable in research that offers financial or other incentives.
Prisoners in WWII: Prisoners, people who are institutionalised (e.g. psychiatric inpatients), even members of the armed forces are easily coerced to participate in research by higher ranking officials who are in command.
Families in Newfoundland: The Newfoundlanders could have been unduly influenced by promises of a genetic test that would allow them to know who is at risk of sudden cardiac death.
Privacy and confidentiality
Also inherent in the principle of respect is the right of an individual to privacy. A person should have control over the access to his / her own body and personal information.
Private (i.e. personal / not public) information provided by research subjects should be treated in confidence (it is confidential i.e. only accessed by those who have been given permission to do so).