Lesson #6 | The Citizen’s Guide to Research

Primum non nocere

Do you know the story of Henrietta Lacks? You may have heard of the book, The Immortal Life of Henrietta Lacks by Rebecca Skloot, or the upcoming HBO movie of the same name.

Henrietta Lacks — whose real name was Loretta Pleasant — was a young black woman who sought treatment for cancer at Johns Hopkins Hospital in 1951. Cells from her cancer biopsy led to the development of the HeLa cell line, which has lead to incredible medical breakthroughs, including advancements in gene mapping and in vitro fertilization. The HeLa cells are still in use today, and have essentially been mass produced for a variety of uses.

Henrietta Lacks would never know the impact her cells made on the world. She died in October 1951, at age 31, from the cancer for which she had sought treatment. And her family, too, wouldn’t know the impact she had made until well into the 1970s. At the time, scientists didn’t need to ask for permission to use her cells for research, and there was no expectation to hide the identity of the cells. (I recommend reading this interview with author Rebecca Skloot, as well as first-hand accounts by Lack’s family.)

It’s an important story that raises many questions about research ethics.

What are research ethics?

Research ethics are guidelines that researchers follow to minimize harm or suffering, ensure the privacy and consent of participants, and prevent bias or conflict of interest. (The title of this lesson is Latin for “Do No Harm,” which medical students agree to as part of the Hippocratic Oath.)

Research ethics is a huge topic with an ugly, often ghastly, history. You may be familiar with the Nuremberg Code, which arose from the Nuremberg trials after WWII. The Nuremberg Code was a response to the highly unethical, torturous research that Nazis had conducted on victims of the Holocaust.

Another well-known research ethics code is the Belmont Report, which was created by the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. (This commission was established as part of the 1974 National Research Act.) There are many similarities between these two sets of rules such as full consent for participation, respect for the autonomy of participants, and the right to privacy.

These documents are specifically about research on humans (physical and psychological). But research ethics impact every type of research, from history to archaeology to conservation, and no study can be conducted without taking ethics into consideration.

How researchers ensure ethical studies

Researchers who are affiliated with institutions have to follow very specific ethics protocol: submitting their research plans to an institutional review board prior to conducting their study. Any study that involves humans in any way must be approved by the IRB, which is an independent committee who evaluates a study for any potential ethical problems that may arise. A researcher cannot proceed with their study until they have revised it to comply with ethics guidelines.

According to the American Psychological Association, there are five recommendations that can help researchers conduct ethical research:

Research ethics in the era of Big Data

New questions about research ethics arise all the time, especially as technology advances. Who owns and can access the data collected on people on a daily basis?

A couple years ago, Facebook came under fire for studying its users and running experiments without user consent. Scientists argued that Facebook changed the moods of its participants, and didn’t give them an opportunity to opt in or out.

This has led many to question: Are research ethics obsolete in the era of Big Data? For instance, who oversees studies conducted by marketing agencies or social media platforms? Or the research done by citizen scientists? How is accountability handled when the research process is faster than ever before?

Many researchers, myself included, think that peer review can help alleviate some of these concerns. Like I discussed in the lesson about funding, peer review means that others in the same field or industry review a study to help eliminate potential bias or misleading results. Peer review helps hold researchers accountable every step of the way. The challenge is getting everyone to participate in peer review.

One thing is for sure: research ethics are complicated, and will continue to become more complicated as we move into the future.

Part 1:
Think of a topic you would be interested in studying. What ethical questions could arise? Consider your relationship to the topic; are there any conflicts of interest that would occur if you were the one conducting the research?

Part 2:
Find a study on a topic that interests you. Do the researchers disclose their ethical process?