Unethical research

  • Posted on: 10 November 2018
  • By: benfell

Update, November 11, 2018: This entry has been changed since it was first published to include brief descriptions of anonymization and confidentiality among the ways that ethical research protects participants and to add that there is a lack of trust in the government to protect confidentiality.

Update, November 12, 2018: I have submitted my resignation to the U.S. Census Bureau. I am appending the text of my resignation to this entry.

Update, November 13, 2018: I have now had two conversations with people higher up in the Bureau seeking to dissuade me from resigning. These conversations go some distance toward allaying my concerns and move my sense of the survey back in the direction of how research ought to be conducted. I have promised a final decision by Thursday, November 15.

Update #2, November 13, 2018: I have been weighing my choices all day. There is now a second addendum: I am still resigning.


Along the way to my Ph.D., in fact in my Master's-level ethics class, I encountered a paper I have since lost track of. But the lesson I took from that article was that unethical research leads to profoundly flawed results.

Research participants who feel they are being deceived—or, I'll add, abused or exploited—will in turn deceive the researchers, sabotaging the research in ways that can be impossible to ferret out. From this, I look at a book like Harriet Washington's Medical Apartheid,1 which documents a history of research on Blacks dating back to slavery in the U.S. that makes Josef Mengele look tame (the Tuskegee syphilis experiments are not even the tip of this iceberg) and infer that the damage to western medical knowledge is incalculable and unknowable.

It's possible to argue that over time, continuing research will overcome this handicap, that wrong results will eventually be found to be wrong. The trouble with this is that, for example, the research Washington reports lies near the foundation of western medical knowledge. That research, however flawed, helped to determine the direction that subsequent medical research followed. That means that wrong paths, from wrong starting points, were followed, possibly (I think probably) leading to results that may have seemed close enough to being correct to be accepted, validating even theoretical approaches that shouldn't have been validated and excluding even theoretical approaches that should have been.

Unethical research is thus a problem not merely because it dehumanizes participants and not merely because we all want to be good human beings who are nice to each other, but because it leads to profoundly flawed results that harm the body of knowledge. We recognize all this, which is why, particularly since World War II and Mengele's experiments, research ethics have taken on additional emphasis. In academia, we have institutional review boards to review research on humans and, moreover, many foundations and government agencies will refuse to fund proposals that have not been successfully vetted. Research ethics are taught at every level of academia, from undergraduate, to Master's, to doctoral.

Ethical standards boil down to protecting the autonomy of participants. Informed consent means that participants participate of their own volition, knowing the risks they may face, and not because they have been induced, whether through deception, compensation, or compulsion, to do so. Protection of participants means that we seek to protect them from harm to the maximum extent possible, including through confidentiality, that is, keeping their specific contributions secret, and through anonymization, that is, separating their identity from those contributions as soon as possible. When deception is unavoidable, we debrief participants afterwards, explaining why we deceived them and the actual purpose of the research. But we should also understand that deception is itself a form of harm: It impairs participants' autonomy because we are fallibly substituting our own judgments about participants' participation for their own judgments.2 This is bare-bones stuff. In critical methodology, we go well beyond even this.3

Nonetheless, unethical research still occurs, sometimes under law which compels participation. And in my long and miserably failed search for a "real job," that is, one that enables me to support myself with basic dignity, I have found myself assisting in such research. My role is to interview participants who have not responded to letters from the agency in question. The interviews require more time than any survey should take and are intrusive. This research is allegedly justified by legality and necessity.

The law protects participants' personally identifiable information and guarantees that we do not share what we learn about individuals with anyone, not even other government agencies. But it also requires their participation. As a practical matter, I don't believe we even can enforce the requirement for participation because to do so, it seems to me, would require us to reveal personally identifiable information.

But it is clear to me that their participation is not voluntary and part of my job is to be persistent in seeking that participation. And I am seeing first hand how the results are skewed accordingly. I had a respondent demand I leave her premises immediately. Another participant simply refused to answer many questions. Yet another participant, informed that his participation was mandatory, initially sat for the interview, but then asked numerous questions about the research and then decided the interview was taking too long. Many simply do not trust government assurances of confidentiality. Such experiences are part of my job description but they also mean the results are skewed because full participation comes only from a self-selecting group of those who acquiesce. Participants who acquiesce cannot represent those who do not.

I'm still new to this job. But this is not in any way what I was working towards with my Ph.D., in which I am accredited by academia to be a "producer of knowledge." I need the job but I don't know how long I can last.


Addendum, November 12, 2018

This has been a hard decision for me to make but I am resigning from the U.S. Census Bureau. Here is the text of my letter:

I am finding that the legal requirement for people to respond to the American Community Survey transforms me into an enforcer and the length of the survey turns an interview into an interrogation. I am dreading getting out of bed each morning; I simply cannot treat my fellow human beings this way.

Please be assured that the people I have encountered at the Census Bureau have been as nice as any I have encountered anywhere and I would gladly consider assisting in a less onerous project or in a project to make this survey less onerous. But I cannot continue in this one in its present form.

Please advise me as to next steps.

Simply put, I needed this job. It was the only way forward I saw in a society that seems determined to prevent me from supporting myself. But I also have to be able to live with myself and with the way I am treating my fellow humans. This isn't it.


Addendum, November 13, 2018

I had two telephone conversations today with people at the U.S. Census Bureau seeking to persuade me not to resign. And I should explain that my regular field supervisor was on vacation when I began working in the field; my interim field supervisor emphasized the legal requirement for selected households to participate, which is apparently contrary to Bureau policy. As the person who conducted the training at the regional office in Van Nuys noted, the mandated participation generates a backlash (a point I also make in the main post, above). My regular supervisor, who came back from vacation today felt that mention of the legal requirement to participate should be a last resort. The content of my second email picks up from this point:

I have been weighing the two telephone conversations I had about resigning from or staying on with the Census Bureau all day.

Certainly your words move the survey situation closer to what I would be comfortable with ethically. It's still not quite voluntary participation, not only because of the law requiring it, but because the U.S. Government--an authority--requests it. But it might be something I could work with.

Then the image of that woman screaming at me to get off her property comes into my mind. And I am remembering the distrust of other respondents that simply could not be allayed. But especially that woman screaming at me.

To be fair, I was warned this might happen in the training. But then there is the reality of it happening in person.

One side of my dilemma is abstract, what I hear in training and on the phone. The other side is tangible. Had this experience occurred later in my career with the Bureau, the one side might be less abstract, more tangible. But it didn't. The screaming woman is very tangible to me and makes it impossible for me to decide to stay on.

I'm sorry, but I must resign. Thank you for the opportunity. I tried. I wish you well.

To put it mildly, this is an unfortunate situation. With the failure of my other employment, I return to doing ridesharing with Uber and Lyft full time, actually more than full time. This is neither a stable nor a sufficient income. And while my prospects for promotion with the Census Bureau may have been limited, they are nonexistent with Uber and Lyft. The prospect, however limited, of promotion at the Bureau opened the possibility of a "real job," that is, one that would enable me to support myself with dignity. This prospect has now evaporated entirely.


 

  • 1. Harriet A. Washington, Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present (New York: Doubleday, 2006).
  • 2. Sissela Bok,& Lying: Moral Choice in Public and Private Life (New York: Vintage, 1999).
  • 3. Norman K. Denzin, Yvonna S. Lincoln, and Linda Tuhiwai Smith, eds., Handbook of Critical and Indigenous Methodologies (Thousand Oaks, CA: Sage, 2008).