Privacy may be considered a uniquely human concept. Human rights to privacy act as cornerstones of successful democracies. We have the absolute right to decide what we want to make public about our private lives in most cases, barring exceptional and very rare circumstances.
When we click on the ‘Accept’ or ‘Agree’ buttons after scrolling through the terms and conditions of apps we install or services we sign up for, it is this right to privacy that we are exercising and sometimes waiving. This also applies when we participate in medical or clinical studies. Our participation is conditional on us providing informed consent.
What is informed consent?
Informed consent refers to the practice of seeking permission from human participants before beginning a research study. It involves providing participants with all the relevant information they need to make a decision about participating in the study and disclosing their personal information or data for the purpose of the study.
Why is informed consent necessary?
Informed consent is an important aspect of research that involves human participation. It finds resonance in a variety of research subjects ranging from clinical and medical to psychological and anthropological ones. Essentially, it demonstrates respect for individual privacy and autonomy in the research process and ensures that patients have a say in studies that concern them. This helps to maintain the health, safety, and dignity of the people participating in the research.
Research governing bodies, such as the National Human Genome Research Institute, take informed consent very seriously. The European Union’s General Data Protection Regulation includes strict penalties for non-compliance with informed consent provisions. Therefore, not only does the informed consent procedure increase the quality of the research but it also ensures fewer legal obligations.
Elements of Informed Consent
Informed consent is the practice of laying bare one’s motives for research so that the participant can choose to participate or not in the research study. In general, the following information must be included while briefing the participants prior to inclusion in research work.
Purpose of the research
Description of the procedure for participation
Steps taken to ensure confidentiality and privacy
Verbal assurance that the participant can withdraw at any point during the process
Information on dissemination
In addition, the researcher must determine two aspects of the consent sought.
Institutions under whose aegis the work is being conducted
Potential risks or benefits to the participants
Information regarding who is privy to the data
The individual must be mentally and physically able to understand and decide for themselves.
The individual must not be coerced by any external force, either to do with the research process or their personal circumstances.
Informed consent is not necessary for those research studies that do not delve into individuals’ lives or use personal data.
Today, the practice of seeking informed consent is so embedded in the research process that it has become a focus of scientific inquiry.
If your study involves human participants or private data, and you are not sure how to get proper informed consent in the right way, do not worry. You can use DoNotEdit services to obtain informed consent from participants. The company is well-equipped to guide you through every step to ensure that you comply with all requirements for human data publishing ethically.