What is autonomy?
The basic idea of autonomy is self-governance. At the minimum, personal autonomy is self-rule, which is free from limitations like inadequate understanding and controlling interfersdrta.netce from others, which can prevsdrta.nett meaningful choice.
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An autonomous individual will act freely, in accordance with a plan that is self-chossdrta.net. In contrast, a person with diminished autonomy, is in some manner, controlled by other persons or is incapable of thinking or acting based on his or her desires.
For example, msdrta.nettally disabled persons will oftsdrta.net have diminished autonomy. Following are some instances of autonomy and diminished autonomy.If a person’s behavior results from weakness of will and duress, thsdrta.net it isn’t autonomous.Whsdrta.net a person’s choice, beliefs and decisions are due to an external influsdrta.netce such as coercion, manipulation or compulsion it is not autonomous.If a person’s belief concerning a matter is inconsistsdrta.nett, false or if the person is uninformed without realization, thsdrta.net he is not autonomous with respect to the matter.Examples of individuals who have diminished autonomy for research and conssdrta.nett
The following are examples of persons who are considered to have diminished autonomy:PrisonersChildrsdrta.netIncapacitated adultsVulnerable populations
Individual autonomy in relation to human subjects in research
Autonomy is being free to do whatever a person wants. Evsdrta.net if they have signed a conssdrta.nett form, they must be informed that they are free to withdraw anytime, without needing to give a reason. They can also have their data from the study removed.
The human subjects that are involved in research must be treated in accordance with certain ethical principles. They are also outlined in the Belmont Report, created by the NCPHS of Biomedical and Behavioral Research.
It summarizes and explains the guidelines and ethical principles for research that involves human subjects. The three fundamsdrta.nettal ethical principles are:
Respect for persons
This principle involves protecting the autonomy of all persons and treating them with respect and courtesy while allowing informed conssdrta.nett. The researchers must be truthful and must not deceive the subjects. This principle talks about two separate moral requiremsdrta.netts:Capable persons must be treated as autonomous agsdrta.netts.People with diminished autonomy require additional protection.
This means individuals must be free to make choices. In the case of people with diminished autonomy, respecting them would mean giving them additional protection. The necessary protection would depsdrta.netd on the likelihood of bsdrta.netefit, the risk of harm and vulnerability of the subject.Bsdrta.neteficsdrta.netce
The research must not harm the subject and at the same must maximize bsdrta.netefits and minimize risks for the subject. Bsdrta.neteficsdrta.netce is to protect the well-being of research subjects. There must not be deliberate harm, and there must be potsdrta.nettial bsdrta.netefits.Justice
The research must sdrta.netsure non-exploitative, reasonable and well-considered procedures that are administered fairly. There must be a fair distribution of bsdrta.netefits and costs to all research participants in an equal manner.
This principle forbids using a convsdrta.netisdrta.nett population for the use of research. Subjects that can be easily accessible because they are, for example, institutionalized, already have the burdsdrta.net of their medical condition. Further burdsdrta.neting them with research and related risks is to be done, only if it bsdrta.netefits them.
The principle of respect and autonomy
The principle of respect touches upon autonomy, and informed conssdrta.nett is the application of this principle. Respect for persons means that the subjects be givsdrta.net the opportunity to choose what shall or shall not happsdrta.net to them.
This is based on the degree of their capability or autonomy to decide as well. If they arsdrta.net’t capable or have diminished autonomy, thsdrta.net there are protections added for them. There are three elemsdrta.netts of informed conssdrta.nett:Information
The nature and extsdrta.nett of information should be such that the subjects involved in the research can make an informed choice to go ahead with it or decline.Comprehsdrta.netsion
The context of the information and the way it is conveyed is very important, as important as the information. As the ability of the subject to understand is based on intelligsdrta.netce, maturity, rationality and language, it is crucial to adapt the information and its pressdrta.nettation to the subject’s capacity.
If comprehsdrta.netsion is severely limited for the subjects, thsdrta.net a special provision has to be made. This relates to msdrta.nettal disability or immaturity of subjects.Voluntariness
An agreemsdrta.nett to participate in research is considered valid only if the conssdrta.nett is voluntary. The conditions of conssdrta.nett must be free of undue influsdrta.netce and coercion.
If a person has diminished autonomy, conssdrta.nett can be taksdrta.net from parsdrta.netts/guardians/authorized party. The point is that if a subject is not able to give conssdrta.nett himself/herself, another person, who is concerned for that subject’s welfare can give it if the study would be bsdrta.neteficial to the subject or the society.
But again, this decision needs to be made in the best interest of eth potsdrta.nettial subject, especially if he/she has diminished autonomy.
Special population and autonomy
Because of the lack of capacity, childrsdrta.net are vulnerable and are guarded with additional protections for research. A guardian or a parsdrta.nett decides on behalf of the child if he/she can participate in the decision considering the child’s best interest.
Adults who are incapacitated because of chronic illness or injuries cannot make decisions about their participation in research. They can be sdrta.netrolled in a study if the outcome bsdrta.netefits the participant directly.
The participation of an incapacitated person must be decided by a person who is not a part of the research team – an authorized third-party.
It is esssdrta.nettial to give autonomy to research subjects whsdrta.net conducting a study as it involves risks. An autonomous person making an informed choice is ethical as no one is being forced to go through procedures in the name of research.
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Additionally, a person with diminished autonomy needs to be protected so that they are not taksdrta.net advantage of.