Module 13:

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 Outcomes: We will learn why consent, confidentiality, and protecting participants is important. 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. This is honestly one of the THE most important modules! For the project, you will be gathering consent forms, collecting data securely, and delivering a research study which priortizes benefits over harms!

What we will do: We will watch videos and read. Content warning: the videos with examples of unethical studies can be emotionally distressing. You are welcome to skip or just watch one of them. We will also have a Quizizz activity. You can reflect privately or on Discord.

This module will take 50-60 minutes (~90 mins if you watch the optional videos) to complete.

What are research ethics?

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!

There are three principles of research ethics:

Respect for persons - treating people as independent or autonomous decision-makers and given them opportunity to choose whether and how they participate in a research study.
Beneficence - Minimizing the possible harms and maximizing the benefits of the study to participants
Justice - Distributing the risks and benefits fairly

Please watch the YouTube Playlist below for more detail about these three principles and how they work in practice! There are TWO videos: one is a clip from The Office and the next is a mini-lecture video with Bree.

Research ethics are 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.

There are several famous examples of unethical research studies. You can learn about these studies in the YouTube Playlist: The Tuskegee Syphilis Experiment, The Milgram Experiment, The Stanford Prison Experiment, and Holocaust Twin Experiments. At the minimum, please watch the first video about The Tuskegee Syphilis Experiment.

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.

Optional: You can read more about the three principles and how we can advance equity through them in this Urban Institute article.

Participate in this Quizizz to apply the principles to hypothetical scenarios and test your knowledge!

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 are recorded but can trust that their identity is not shared when researchers report study results.

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 permission to do our research with someone. We always want to make sure someone volunteers to participate.

Following from the action of consent 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 that will be collected, who it will be shared with, how it will be protected, and the potential risks and rewards that 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.

Special considerations when 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 (undert 18). This is telling the minor participant the same information you would an adult, the only difference being that they cannot legally give consent. 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!

Why do we need both?

Parental or guardian consent is the legal part of the puzzle here. Because folks under the age of 18 are not legally able to sign documents, we have to gain permission from their parent or guardian, who can legally sign agreements.

Youth assent is the respect part of the puzzle. We recognize that youth are people, even if the law doesn't give them the full rights and responsibilities adults have. Young people deserve to have their opinions and decision respected in their choice to participate or not, especially given that they are the subjects of our study!

Discord Discussion

In the Discord discussion for Module 13, share one part of this module that really resonated with you and why. It could be one of the three principles, an example of unethical research, the importance of consent, or anything else that speaks to you.

Takeaway: We've learned what ethical principles are and why they are important: research has the potential to harm and we want to make sure we are doing everything we can to prevent harm!! The research ethics principles are respect, beneficence, and justice. In action, these principles include informed consent, confidentiality, and reducing harm to the greatest extent possible.

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