Module 9:
Ethics, Confidentiality, And Consent
Overview
This module is focused on understanding ethics, confidentiality, and consent in a research context.
Why do we need this? The history of research has sadly been marked by deeply harmful studies. Ethics, which includes the concepts of confidentiality and consent, are the methods researchers like yourself incorporate into their studies to reduce the harms to study participants as much as possible.
Learning Goals: You'll be able to identify ethics practices in our study, and future studies you participate in or see! You'll also be ready to implement confidentiality and receive informed consent from study participants.
Application: Gathering consent forms, collecting data securely, and delivering a research study which informs without harming!
What are ethics, and why do they matter?
Ethics are guidelines and procedures through which we protect research participants from harm. They tend to be pretty extensive - for example if someone is testing a new drug, they have to make sure people receiving this new drug know everything they may encounter as a side effect! All of this is governed by an Institutional Review Board (IRB). IRBs are panels which approve of and suggest changes to ethics practices for studies involving humans.
We need ethics for a variety of reasons. Most importantly, it's so we know that our research is benefiting society as a whole without being at the expense of others. The infamous Tuskegee Syphilis Experiment stands out as a motivator behind the adoption of ethical principles.
In this horrific experiment, performed without their knowledge on the Black community in Tuskegee, Alabama, people were infected with syphilis. The researchers wanted to know what would happen if the disease went untreated. This went on for over 40 years, while the involuntary participants suffered from a treatable disease.
That disgust you probably feel reading about this is why researchers now implement strict codes of ethics. Research participants should be voluntary, informed, and protected from harm.
From this we as researchers derive the principle of "do no harm." With this in mind, we do everything we can to reduce the risks of harm to research participants.
One principle of ethics is confidentiality. What does this mean?
Confidentiality stems from this "do no harm" principle. You're probably already familiar with the concept, though maybe not by name. This is the practice of keeping things, especially names and identifying information, private.
Think of when you talk to a close friend about a personal issue; it's important to you that they keep it to themself. Researchers apply this same idea to the data they collect. Providing this security to participants establishes trust - they can feel confident that what they share is protected. Trust is a very important dynamic between the researcher and participants.
Another aspect of confidentiality is anonymity - the idea that what respondents share can't be traced back or attached to them. This also adds to the sense of trust and security for respondents; they know their responses is recorded without who they are coming along too.
We'll all sign a confidentiality pledge, to ensure everyone understands the importance of and practices of maintaining confidentiality. Signing these confidentiality pledges lets the IRB know we've passed this crucial step in the research process, and gives everyone the confidence that we are committed to keeping what we learn from respondents safe and secure.
What are Consent and Informed Consent?
The last aspects of ethics we want to cover are consent and informed consent. Both of these also come from the "do no harm" principle of ethics. Consent is the process of obtaining a permission to do our research with someone. We always want to make sure someone volunteers to participate.
Following from the action of consent this is the concept of informed consent. This extends the voluntary nature of research to also include telling potential participants as much as we can so their decision to participate or not is based in their own logic. Our job, before any research is conducted, is to tell participants about all data which will be collected, who it will be shared with, how it will be protected, and the potential risks and rewards which might come from participation.
Participants should also know that they can say no to participating, opt-out of particular questions, or opt-out entirely at any point in the data gathering process. Participants should not be under the influence of any substances, or feel threatened if they do not wish to participate.
Can you think of examples in your personal life where you've been given information about what you're signing up for?
Some examples we all see, but think little of, are the agreements when we sign up for an account or website online. The long forms presented before you're fully set up is a form of consent, outlining the company's practices with your data and your rights surrounding it!
For our study, consent can be collected verbally or in writing.
Take some time to watch this brief video from Brown University, which goes over some of the concepts we've covered. It includes a few more examples of unethical studies or research practices. Can you identify the unethical behaviors in these projects?
We have some special considerations, since we're working with minors (people under the age of 18).
We've learned some very important information about defining and getting informed consent. Since we're working with people under 18, we have to take some special precautions and do this process a little differently.
First and foremost, we will gain assent from minor participants. This is telling the minor participant the same information you would an adult, the only difference being that they cannot legally sign the document which says they agree. Read out or present to them the same risks and rewards, data collected, data sharing practices, and data security practices. From there, allow the minor to agree or disagree to participate. After this, the minor's parent or guardian will need to be given the same information, to which they can agree or disagree to participate for the minor.
Even if the minor gives their assent, if a parent or guardian says no, that decision is binding.
We'll need both of them to say yes for us to collect any data from the little guy!
Bringing it All Together: We've learned what they are and why we use ethical practices. These practices include informed consent, confidentiality, and reducing harm to the greatest extent possible. We also discussed gaining this informed consent from minors, and the difficulty that presents.