Based on the article by Shelton et al. (2015), it is essential that when a patient’s surrogate is asked to confirm participation in medical research that the latter has extensive information about the consequences of his/her decision (and what it means to give consent). Given that numerous individuals do not really understand what it means to take part in medical research (and each type of medical research significantly differs, has its on specifics), it is the medical staff’s obligation to clearly inform the patient or third party (e.g., if the patient is unconscious) what participating in the research entails.
When it comes to community consent, I feel that it has clear advantages, yet should be implemented ethically. First of all, the medical staff must ensure at all times that the third party was close to the patient and trusted by him/her prior to the illness. To clarify this, a short interview should be conducted with the third party. In cases when a trusted third party cannot be reached, it would be unethical to seek consent from someone who was not emotionally close to the patient. Furthermore, if/when the patient’s health stabilizes, the patient should be approached directly for his/her consent. If the patient refuses to take part in research (after a third party confirmed his/her participation), the data should be immediately deleted from the database.
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Based on the article, computer-based education intervention can prove especially effective in teaching surrogates about genomic research. At the same time, it is important to provide patients (not only third parties) with extensive information about the research. In most cases, patients are not reluctant to provide data for medical research if they feel that they are contributing to an important cause.
As for me, I would not be reluctant to provide my medical data for research. At the same time, if my medical records were included in research without my consent, I would feel disrespected and angry, since this type of data is very personal.
To conclude, when an individual is too ill to provide informed consent, a trusted third party should be engaged. After the individual has recovered, he/she should be approached personally to verify whether his/her data can be used for the research. In my opinion, patients and their personal information should be treated with due respect; it is always up to the patient to decide whether he/she is willing to contribute personal data for research purposes.
