Introduction
The change in demography, multiple chronic conditions, increasing infectious disease threats, and small healthcare budgets put healthcare systems under serious challenge. In addition, there is an increasing need to generate more knowledge to improve patient treatments. Reuse of patient health data is promoted as a means to generate evidence on the effectiveness, benefits, and harms of different treatments. Patient data are also reused for quality assurance, public health and commercial applications.
The wide deployment of electronic health records has created a potential for timely access to enormous amount of data to answer a given research question. However, reuse of patient data has ethical and legal concerns. These
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It could be argued that it is even morally obligatory that it is undertaken because not performing the research would minimize utility.
For research using de-identified data to be ethical, not only must the consequences of the research be considered, but also risks to patients whose de-identified data are used, and whether the patients will want to contribute their data must also be thought about. However, utilitarianism does not address these concerns. However, utilitarianism considers the use of de-identified data permissible, if the outcomes bring better overall utility than the risk of harms and violation of rights to perform research.
Duty-based deontological theory
Deontological ethics is concerned with what people do, not with the consequences of their actions. Immanuel Kant (1724-1804) is credited for laying the foundations of deontology. Under this form of ethics, good consequences do not necessarily justify an action. Kant´s duty-based ethics was based on what he called the ´categorical imperative´ [4].
The first formulation of categorical imperative states that “always act in such a way that you can also will that the maxim of your action should become a universal law” [3]. This means one should be willing for the ethical rule governing his/her action to be applied equally to everyone.
There is a strong argument that clinicians have a duty to participate in research and improve the knowledge that underpins good medical care [6]. The argument is based
In 1788, German philosopher Immanuel Kant propounded the ethical theory of Deontology which is the moral compulsion to act according to the laid down guidelines of a set of maxims despite the result or consequences that such actions may incur in the end. While religious deontology was based on divine decrees, Kantian deontology is based on human reasoning; rationality. Deontology expects that whenever a moral agent makes a decision it should not be under the influence of emotions, human inclinations or even selfish desires but should be based on morals and rationale solely.
“Deontology is a moral theory that emphasizes one’s duty to do a particular action just because the action, itself, is inherently right and not through any other sorts of calculations – such as the consequences of the action” (Boylan, 2009, p. 171). In many aspects deontology is contrasted with utilitarianism. Deontology is based upon principle and does not calculate the consequences (Boylan, 2009, p. 171). Deontology attracts those seeking a stronger moral attraction because it refers to commanding rather than commending and commanding is a stronger structure (Boylan, 2009, p. 172). The
Deontology is an ethical theory concerned with duties and rights. The founder of deontological ethics was a German philosopher named Immanuel Kant. Kant’s deontological perspective implies people are sensitive to moral duties that require or prohibit certain behaviors, irrespective of the consequences (Tanner, Medin, & Iliev, 2008). The main focus of deontology is duty: deontology is derived from the Greek word deon, meaning duty. A duty is morally mandated action, for instance, the duty never to lie and always to keep your word. Based on Kant, even when individuals do not want to act on duty they are ethically obligated to do so (Rich, 2008).
Value the rights of patients to whom you will need to obtain and use their health data to collaborate in their own care with other clinicians and physicians.
Deontology is an ethical position that examines the morality of an action based on the action’s adherence to rule or rules. Many times is described as obligation or rule based ethics (Alexander). Therefore, the only actions that are considered moral are those that are performed solely for one’s duty to the moral law rather than one’s desire. Deontology is the school of thought that Kant comes from. Immanuel Kant was a critical figure in philosophy in the modern age. His work was the foundation of the most famous form of Deontology.
How data is captured varies from institution to institution. In order for data to be well understood, data should have a definition that is consistent and comprehensively understood by all users of the data. Standardization of how data is captured is critical to allow the production and export of data needed to support quality assessment, decision support, exchange of data for patients with multiple health care providers and public health surveillance. Patient safety and quality improvement are dependent upon embedded clinical guidelines that promote standardized, evidence-based practices. Unless we can achieve standardization with terminology, technologies, apps and devices, the goals of EHR implementation will not become a
The categorical imperative suggests that a course of action must be followed because of its rightness and necessity. The course of action taken can also be reasoned by its ability to be seen as a universal law. Universal laws have been deemed as unconditional commands that are binding to everyone at all times. Kant
In contrasts, Deontology, or the “Kantian Duty Based ethics”, is based on duty or principals
eCRFs offer an enormous amount of advantages such as improved data quality, integrated patient’s health and financial data, audit trial capabilities, identifying eligible patients for clinical trials from patient’s records, trial randomization, following patient outcomes, creating patient registries, and monitoring adverse drug reactions. eCRF are the most efficient way to connect patients to their medical data. They not only facilitate information sharing among doctors and guard against needless medical errors, but also offer a safety advantage in that health record would never again need to be stored. While, eCRF does improve investigator’s abilities to share information and leads to more efficiency, it does lead to the idea that the government and corporations have the ability to exploit the healthcare technology. With eCRF, a patient cannot control that who sees, uses and sells their
The first formulation of the categorical imperative is “act only in a way the maxim of which can be consistently willed as a universal law of nature.” This formulation in principle has as its supreme law, “always act according to that maxim whose universality as a law you can at the same time will” and is the only condition under which a will can ever
Moreover, Kant was a proponent of deontological ethics, which states that the responsibilities, obligations, commitments, and ultimately our duties are what guide us down the proper journey, rather than the fear or potential consequences (Desjardins, 2009, p. 35). Converse to utilitarianism, where individuals receive scrutiny for their actions, deontology states that when acting on duty or obligation, consequences are irrelevant (Desjardins, 2009, p.
Colin Robson and Kieran McCartan address that “…research, carried out with the best of intentions, becomes unethical because of such effects.” (Robson and McCartan, 2011: 208) These are called ‘unintended consequences.’ They go on to describe an article called, ‘The unanticipated consequences of planned social action’ (Merton, 1936), in which research was carried out and resulted in negative, unplanned repercussions. While this is never the aim of any research, it is appropriate to address that these outcomes can happen, as well as the reasons these might happen. Before beginning research, ethical considerations are put in place to properly protect both participants from harm and the researcher’s mode of study. Two of the most crucial to be considered are informed consent and confidentiality. Each of those come with their own
Categorical Imperative: Is a term defined in our textbook as, “An absolute moral rule that is justified because its logic” (Rosenstand, G-1). It’s a term developed by Emmanuel Kant, a German philosopher, born in 1724.
The decisions of deontology may be appropriate for an individual but does not necessarily produce a good outcome for society. Deontology (also known as nonconsequential), by contrast, is dependent on moral laws, duties, rules and intuitions and centers on the principles of 18th century philosopher Immanuel Kant. These moral laws and duties declare that actions such as lying, murdering and breaking promises are fundamentally wrong and we have no duty to partake in these actions. (CRI) This moral theory stems from the Greek works “deon” and “logos”, which mean the “study of duty.” Deontology states that an action’s morality holds great value, and therefore the result of a wrong action does not make it’s outcome ethical. In other words,
The deontology theory developed by Immanuel Kant proposes that a moral person does his or duty regardless of the outcome. The individual as social being has a moral right to act in ways that conform to standards of society and refrain from the wrongs in society. The individual owns it a duty to accept the general duty of doing good and secondly accept duties that are personal or evolve from social relations. Kant argues that the fundamental principle of morality is considered as, “act only on that maxim through which you can at the same time will that it should become a universal law”. Kant’s theory reveals two types