Human Rights Violations
The Tuskegee Syphilis Study represents an era where ethical standards did not govern the conduct of research. A review of this study showed that researchers, in their need to document the natural progression of syphilis, misinformed the participants about their true intent and did not treat them of the disease even when this became easily available. The Tuskegee experience facilitated the inclusion of federal policies governing studies intending to use human participants in the Code of Federal Regulations).
Federal regulation led to the founding of Institutional Review Boards (IRBs), which protect human participants’ rights by requiring research proposals to be reviewed for compliance with ethical standards prior to their commencement. Policy combined with a greater awareness of human rights and its protection in the context of research has led to greater adherence to research ethics. Thus, current research protocols include obtaining valid informed consent to uphold the right to autonomy. The purpose of the study, the benefits and risks, the duration of participation, assignment to groups, and other procedures involved are truthfully and completely made known through an informed consent form. Further, decisional capacity is ascertained and the right to withdraw from the study is expressed.
The right to privacy is protected by protocols aimed at maintaining confidentiality as well as anonymity of patient information while safeguarding research data. Research methodology is meticulously formulated to protect participant wellbeing and prevent their exploitation and harm consistent with the ethical principles of beneficence and non-maleficence. Finally, justice is ensured by carefully considering who should be burdened with generating knowledge, as stated in the participant inclusion and exclusion criteria, in relation to who will reap the benefits from this knowledge.
