Research participant
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A research participant, also called a human subject or an experiment, trial, or study participant or subject, is a person who voluntarily participates in human subject research after giving
informed consent Informed consent is a principle in medical ethics and medical law, that a patient must have sufficient information and understanding before making decisions about their medical care. Pertinent information may include risks and benefits of treat ...
to be the subject of the research. A research participant is different from individuals who are not able to give informed consent, such as children, infants, and animals. Such individuals are preferentially referred to as subjects.


Rights

In accordance with modern norms of
research ethics Research is "creative and systematic work undertaken to increase the stock of knowledge". It involves the collection, organization and analysis of evidence to increase understanding of a topic, characterized by a particular attentiveness ...
and with the
Declaration of Helsinki The Declaration of Helsinki (DoH, fi, Helsingin julistus, sv, Helsingforsdeklarationen) is a set of ethical principles regarding human experimentation developed originally in 1964 for the medical community by the World Medical Association (WMA ...
, researchers who conduct human subject research should afford certain rights to research participants. Research participants should expect the following: *to be the target of beneficence *to experience research justice *to get
respect for persons Respect for persons is the concept that all people deserve the right to fully exercise their autonomy. Showing respect for persons is a system for interaction in which one entity ensures that another has agency to be able to make a choice. This c ...
*to have
privacy for research participants Privacy for research participants is a concept in research ethics which states that a person in human subject research has a right to privacy when participating in research. Some typical scenarios this would apply to include, or example, a surve ...
*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 A connotation is a commonly understood cultural or emotional association that any given word or phrase carries, in addition to its explicit or literal meaning, which is its denotation. A connotation is frequently described as either positive ...
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 Parallel is a geometric term of location which may refer to: Computing * Parallel algorithm * Parallel computing * Parallel metaheuristic * Parallel (software), a UNIX utility for running programs in parallel * Parallel Sysplex, a cluster o ...
to it. Social scientists have emphasized that word choice influences the way that researchers think of study participants and the respect that they have for them.


Issues

Payment for research participants is a controversial topic where experts have varying views.


History

In 1998 ''
The BMJ ''The BMJ'' is a weekly peer-reviewed medical trade journal, published by the trade union the British Medical Association (BMA). ''The BMJ'' has editorial freedom from the BMA. It is one of the world's oldest general medical journals. Origi ...
'' adopted the policy of calling people "participants" rather than "subjects". The intent for this practice was to show more respect for people. Prior to this various other research organizations had considered making this switch.


References


Further reading

*. This is a layman guide to research participant rights.


External links


explanation of rights
from the United States government

from Yale University {{Telemedicine navbox Human subject research Product testers