Good Science Starts with Good Ethics
The social media world was rocked recently when a paper published in a scientific journal revealed that Facebook had been manipulating users’ news feeds to determine whether the concept of “emotional contagion” was the same in virtual contexts as it was in person. You know how the whole office lights up when one person gets flowers? Researchers wanted to confirm the hypothesis that the same kind of emotional transfer can happen in a virtual context devoid of non-verbal cues. Turns out: it can.
The problem with this study isn’t the science—it’s the ethics of the research. Specifically, the complaint is that investigators never obtained informed consent from Facebook users to participate in this research study.
Why should that matter? Here’s the problem: without giving members the option to choose whether or not they wanted to participate in research, the investigators treated people simply as a means to an end—in this case, to verifying their hypothesis. And there’s no guarantee that the researchers’ ends were the same as mine.
We treat many things as a means to an end—we use planes, trains, and automobiles to get us from place to place, and we use food and water to nourish our bodies. But people are not like autos or apples: people have interests, desires, and preferences. I am the only one who truly knows what my values, goals, and priorities are, and therefore I’m the only one who can decide whether or not participation in research coincides with those goals.
Facebook points out that users agreed—via the fine print—to participate in this kind of work when they agreed to the terms of service. But that argument doesn’t work either. Nobody can agree to unspecified future research; after all, how would one be truly “informed” about research that the investigators haven’t even imagined yet? The best that can be expected is that individuals can agree to be contacted for future research—and that’s what should have happened here.
Some would argue that there are no real “risks” here—they were not injecting anyone with a drug, or asking them to exercise to the point of exhaustion, or even asking them potentially sensitive survey questions. And because there are no risks, they claim, they didn’t need to ask permission.
But think about how it makes you feel to know that your news feed—and therefore your emotions—may have been manipulated without your knowledge or consent. Do you feel hurt? Confused? Violated? That’s a natural consequence when investigators fail to abide by an important ethical foundation of human subjects research known as respect for persons. The investigators failed to recognize that their subjects were autonomous individuals capable of self-determination and therefore had a right to opt out of this study.
At EPA, we take the informed consent process seriously. Whether you’re approached to be part of a study in our Healthy Heart program, or to help investigators understand more about how the environment affects your child’s asthma, EPA scientists will first explain the research to you so that you can judge whether or not participation makes sense for you and your family.
Good ethics starts with good science. But as we learn from this example, good science needs good ethics, too.
About the Author: Dr.Toby Schonfeld is EPA’s Human Subjects Research Review Official and the Director of the Agency’s Program in Human Research Ethics and Oversight.
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