Description
1st:Every person has a right to self determination, privacy, anonymity, fair treatment, and protection from discomfort and harm. Involving a vulnerable population including infants is a violation on many accounts. There should be an advocate such as the mother and father or even the nurse taking care of the infant. The state government official trying to participate in this state-wide study to test newborns without respectfully informing the mother raises ethical concerns. Lobiondo-wood and Haber (2022) stated, “Informed consent is a legal principle that means that potential subjects understand the implications of participating in research and they knowingly agree to participate” (p. 247). This dives into the protection of human rights and the right to self-determination. From table 13.2, the right to self-determination is the right for the potential participant to choose to participate or not. In this case, the infants would not have a choice because they are part of the vulnerable population and simply cannot verbalize or comprehend what the study is about. Individuals have the right to know what testing and procedures are being done on them. The mother or father are the primary guardians, making them the first people to go to for consent. This is also an example of a violation of the right to privacy and dignity. Parents or guardians of children who might test positive for HIV could experience immense distress and embarrassment if they wish to keep this sensitive information confidential. They would be unaware of this information being shared with others in the study. HIV is crucial information due to its life-threatening capabilities. Failure to inform the mothers would deprive her of the opportunity to seek proper treatment. This information is crucial to public health purposes because if left untreated, the cases would go unreported, leaving the rest of the population at risk. 2nd:I refute the practice that includes the testing of all newborns for HIV especially since the mothers won’t be addressed regarding the test being performed on their newborns nor will they be informed with the results therefore the findings of the proposed study will be invalid if the protocol is carried out. Special consideration should be given to protecting the rights of vulnerable groups, in this case of newborn children, LoBiondo-Wood and Haber highlight how, “Research in children requires parental permission and child assent” (LoBiondo-Wood and Haber, 242). The research planning to be done doesn’t have the parents permission as the parents aren’t even aware of the proposed study the state government official is interested in conducting. According to LoBiondo-Wood and Haber, “No investigator may involve a person as a research subject before obtaining the legally effective informed consent of a subject or legally authorized representative” (LoBiondo-Wood and Haber, 238). This would automatically make the proposed study invalid if conducted without the legally effective informed consent forms and violates the ethical principle of respect.LoBiondo-Wood and Haber explain that, “Protection of human rights includes (1) right to self-determination, (2) right to privacy and dignity, (3) right to anonymity and confidentiality, (4) right to fair treatment, and (5) right to protection from discomfort and harm” (LoBiondo-Wood and Haber, 245). Someone who’s informed about a proposed study and given the option to participate or not is an autonomous agent as they have the freedom to choose, but a subject’s right to self determination is violated through covert data collection. We know that the data collected would be covert since the newborns will be tested without their own personal knowledge nor their guardians/parents knowledge. The right to privacy and dignity is also violated as the subject doesn’t know what the data collected will be used for or who it’s going to be shared with, and it’s also violated since the information will be withheld from the newborns parents.
