Introduction
Privacy and confidentiality are two key aspects that need to be put into consideration when it comes to patient data and information. Earlier, we were made to understand that privacy has to do with safeguarding a patient’s data and information from being accessed by other parties. On the other hand, confidentiality has a similar basis but a different scenario. It entails authorized persons only accessing data. For instance, the doctor can be among the people who can be able to access a patient’s healthcare information to a particular extent.
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“Is it a violation of the ethical principle of autonomy to aggregate and generate new information about a patient’s health without their knowledge, permission, or consent?”
Autonomy can, in the first place, be defined as the condition or the right of self-government (“BMA – 2. Autonomy or self-determination,” 2013). It can equally be defined as independence or freedom from any form of external influence or control. The aspect of autonomy is, in fact, the most discussed aspect of healthcare in an organization. Respecting decisions that are termed competent in medical law are some aspects that are considered a cornerstone of medical law in a healthcare scenario (“BMA – 2. Autonomy or self-determination,” 2013).
In a healthcare scenario, autonomy has to do with the decision of a patient (competent adult) to make decisions that are informed regarding their own medical data and information (Schemer, 2002, p. 112). Autonomy mandates healthcare organizations to seek the consent of patients or, in other words, an informed agreement with them before treatment or investigations take place (Gennaro, 2002, p. 161). A good scenario where autonomy is practiced by individuals in healthcare is when they choose to refuse treatment that is life-sustaining.
The law is clear, with autonomy in the first place. It clearly states that an adult patient without any form of mental sickness, as proved by a medical doctor, has an absolute right and freedom whether or not to agree to be treated in any healthcare facility (AP, n.d.). We should, however, have it clear that freedom or right is not limited to any form of decisions or agreements that other laws might consider sensible. The law exists regardless of whether the decisions are rational or irrational, existent or non-existent, and only goes as per the wish of the adult patient who owns the data (AP, n.d.).
There are two key aspects that are usually put into consideration before a decision is considered autonomous in healthcare. The individual first must not be under duress or any form of external constraint. The second major aspect is that the individual must have internal capacities that are relevant to terming him or her as self-governing. In a medical scenario, decisions are usually considered autonomous on the basis of them being voluntary and from a well-informed perspective.
Gut Reaction
It ends up so intriguing when you find yourself in such a situation when you make a decision, but it is rejected. We have been made to understand that we as individuals have a right in healthcare to make our own decisions regarding our own health conditions. However, in some instances, this might not be the case. Generation of new knowledge is forbidden, having discussed and understood what it takes under the aspect of autonomy. Therefore, having such cases happening can be regarded as unethical as well as irresponsible behavior that needs immediate legal action to be taken so that justice can be done at the end of the day.
All procedures, as well as information regarding a patient’s health status, need to remain private and confidential. HIPAA, as a single rule or law, is clear about the security and privacy of patient’s data and information in healthcare. The generation of new information regarding a patient should, therefore, not be taken lightly as it goes against both the legal as well as ethical guidelines in healthcare.
The key assumption when putting into consideration some of these aspects is the fact that the person is completely sane as well as informed of the matter. This includes the ethical and legal issues as well as the reasons behind the duplication or creation of the said information or data. Such an individual has full rights and freedom to come out clearly and defend themselves.
Biases do exist in most cases. For instance, there are cases I personally experienced where the patient was assumed or forced to be insane. Bias instances, in this case, are usually few. Personally, I have only read and heard about a few of them. However, I believe that there is more than what meets the eye regarding this particular issue in healthcare.
References
AP, S. (n.d.). Formal and effective autonomy in healthcare. – PubMed – NCBI. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/17012497
BMA – 2. Autonomy or self-determination. (2013, March 27). Retrieved from https://www.bma.org.uk/advice/employment/ethics/medical-students-ethics-toolkit/2-autonomy-or-self-determination
Gennaro, R. J. (2002). A dialogue on ethical issues of life and death. Lanham, MD: University Press of America.
Schermer, M. (2002). The different faces of autonomy: Patient autonomy in ethical theory and hospital practice. Dordrecht: Kluwer Academic Publishers.
