Research participant

A research participant, also called a human subject or an experiment, trial, or study participant or subject, is a person who participates in human subject research by being the target of observation by researchers.

Rights of research participants

In accordance with modern norms of research ethics and with the Declaration of Helsinki, researchers who conduct human subject research should afford certain rights to research participants.^[1] Research participants should expect the following:

to be the target of beneficence
to experience research justice
to get respect for persons
to have privacy for research participants
to be informed
to be safe from undue danger

Terminology

There are several standard themes in the choice of words (participant, subject, patient, control):

In scientific publishing, many usage commentators prefer the term participant rather than subject because the latter has a connotation to some readers of limited autonomy, as if the person were in a subservient or uninformed role. In contrast, participant connotes active consent, involvement, and awareness.
In retrospective studies such as chart-review studies, the word participant may be a poor choice, because the persons being studied are not actively participating (and they may not even be aware of the particular study, although they have consented to the idea that their data may be included in scientific studies when sufficiently anonymized). Therefore, replacing the word subject with participant is only conditionally (not universally) appropriate. In most such studies, the word patient may be preferable to subject, as long as all of the subjects in that study were patients (see next point).
Not all participants are patients. Some are healthy controls. In some study designs, all the participants are patients; but in others, only some of them are. Therefore, replacing the word subject with patient is only conditionally (not universally) appropriate.
A case is an instance of disease. A patient is a person. Patients are not cases. When writing, investigators should use the words appropriately. For example, a 55-year-old patient with melanoma is not a 55-year-old case of melanoma.
- In case-control studies especially, many instances of this distinction may arise. Although it is accepted to refer to control-group participants as controls, it is poor writing to refer to case-group participants as cases. Instead, the term case participants is used; and control participants is parallel to it.

References

↑ Coleman, Carl H. (2005). The ethics and regulation of research with human subjects. Newark, NJ: LexisNexis. ISBN 978-1583607985.

External links

explanation of rights from the United States government
example list of rights from Yale University

Research participant rights

Rights	Beneficence Justice Respect for persons Privacy for research participants Right to withdraw Return of results Informed consent

Human subject research	Clinical research Biobank Social research

Ethical systems	Research ethics Medical ethics Bioethics Clinical research ethics Biobank ethics

Guidelines for human subject research	List of medical ethics cases Nuremberg Code Declaration of Helsinki Belmont Report Common Rule

Monitoring in clinical trials	Ethics committee Institutional review board Data monitoring committee Community advisory board

Telemedicine

Background concepts	Health informatics Telecommunication

Medical record	Admission note Blue Button De-identification Electronic health record Health Insurance Portability and Accountability Act Personal health record

Patient participation	Decision aids Doctor–patient relationship E-patient Health 2.0 Health education Knowledge translation mHealth Participative decision-making Patient Activation Measure Shared decision-making

Health information on the Internet	Health information on Wikipedia Online patient education PubMed

Telemedicine subspecialties	eHealth Remote surgery Remote therapy Tele-audiology Tele-epidemiology Teledentistry Teledermatology Telehealth Telemental health Telenursing Teleophthalmology Telepathology Telepharmacy Telepsychiatry Teleradiology Telerehabilitation

Roles to play	Open-source healthcare software Patient opinion leader Research participant Virtual patient

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Research participant

Rights of research participants

Terminology

Further reading

References

External links