3.1 Ethical considerations in human subjects research

While all research comes with its own set of ethical concerns, those associated with research conducted on human subjects vary dramatically from those of research conducted on nonliving entities. The US Department of Health and Human Services (USDHHS) defines a human subject as “a living individual about whom an investigator (whether professional or student) conducting research obtains (1) data through intervention or interaction with the individual, or (2) identifiable private information” (USDHHS, 1993, para. 1).^[1] Many social work researchers prefer the term “participants” to “subjects'” as it acknowledges the agency of people who participate in the study. For our purposes, we will use the term participants except when referring to “human subjects research” or when the term “human subjects” is used in policy.

In some states, human subjects also include deceased individuals and human fetal materials. Nonhuman research subjects, on the other hand, are objects or entities that investigators manipulate or analyze in the process of conducting research. Nonhuman research subjects typically include sources such as newspapers, historical documents, pieces of clothing, television shows, buildings, and even garbage (to name just a few), that are analyzed for unobtrusive research projects. Unsurprisingly, research on human subjects is regulated much more heavily than research on nonhuman subjects. This is why many student research projects use data that is publicly available, rather than recruiting their own study participants. However, there are ethical considerations that all researchers must take into account, regardless of their research subject. We’ll discuss those considerations in addition to concerns that are unique to human subject research.

Why do research participants need protection?

First and foremost, we are professionally bound to engage in the ethical practice of research. This chapter discusses ethical research and will show you how to engage in research that is consistent with the NASW Code of Ethics as well as national and international ethical standards to which all researchers are accountable. Before we begin, we need to understand the historical occurrences that were the catalyst for the formation of the current ethical standards. This chapter will enable you to view ethics from micro, meso, and macro perspectives.

The research process has led to many life-changing discoveries; these have improved life expectancy, improved living conditions, and helped us understand what contributes to certain social problems. That said, not all research has been conducted in respectful, responsible, or humane ways. Unfortunately, some research projects have dramatically marginalized, oppressed, and harmed participants and whole communities.

The sad fact is that not only did all of these occur, in many instances, these travesties continued for years until exposed and halted.

Does it sound as if ethical breaches in research are something that are relegated to the past? Unfortunately, that’s not the case. Take for instance research funded by the U.S. Department of Health & Human Services. Their Office of Research Integrity publishes verified research misconduct from their funded research. You can check out their case summaries to read about the ethical violations and their consequences.

Additionally, these examples have contributed to the formation of a legacy of distrust toward research. Specifically, many historically oppressed groups have a deep distrust of agencies that implement research and are often skeptical of research findings. This has made it difficult for individuals and communities to support and have confidence in medical treatments, advances in social service programs, and evidence-informed policy changes. While the aforementioned unethical examples may have ended, this deep and painful wound on the public’s trust remains. Consequently, we must be vigilant in our commitment to ethical research.

Many of the situations described may seem like extreme historical cases of misuse of power as researchers. However, ethical problems in research aren’t only extreme examples that took place in the past. None of us are immune to making unethical choices and the ethical practice of research requires conscientious mindful attention to what we are asking of our research participants. A few examples of less noticeable ethical issues might include: failing to fully explain to someone in advance what their participation might involve because you are in a rush to recruit a large enough sample; or only presenting findings that support your ideas to help secure a grant that is relevant to your research area. Remember, any time research is conducted with human beings, there is the chance that ethical violations may occur that pose social, emotional, and even physical risks for groups, and this is especially true when vulnerable or oppressed groups are involved.

A brief history of unethical social science research

Research on humans hasn’t always been regulated in the way it is today. The earliest documented cases of research using human subjects are of medical vaccination trials (Rothman, 1987).^[14]  One such case took place in the late 1700s, when scientist Edward Jenner exposed an 8-year-old boy to smallpox in order to identify a vaccine for the devastating disease. Medical research on human subjects continued without much law or policy intervention until the mid-1900s when, at the end of World War II, a number of Nazi doctors and scientists were put on trial for conducting human experimentation during the course of which they tortured and murdered many concentration camp inmates (Faden & Beauchamp, 1986).^[15]

The trials, conducted in Nuremberg, Germany, resulted in the creation of the Nuremberg Code, a 10-point set of research principles designed to guide doctors and scientists who conduct research on human subjects. Today, the Nuremberg Code guides medical and other research conducted on human subjects, including social scientific research.

Medical scientists are not the only researchers who have conducted questionable research on humans. In the 1960s, psychologist Stanley Milgram (1974)^[16] conducted a series of experiments designed to understand obedience to authority in which he tricked subjects into believing they were administering an electric shock to other subjects. In fact, the shocks weren’t real at all, but some, though not many, of Milgram’s research participants experienced extreme emotional distress after the experiment (Ogden, 2008).^[17] A reaction of emotional distress is understandable. The realization that one is willing to administer painful shocks to another human being just because someone who looks authoritative has told you to do so might indeed be traumatizing—even if you later learn that the shocks weren’t real.

Around the same time that Milgram conducted his experiments, sociology graduate student Laud Humphreys (1970)^[18] was collecting data for his dissertation on the tearoom trade, which was the practice of men engaging in anonymous sexual encounters in public restrooms. Humphreys wished to understand who these men were and why they participated in the trade. To conduct his research, Humphreys offered to serve as a “watch queen,” in a local park restroom where the tearoom trade was known to occur. His role would be to keep an eye out for police while also getting the benefit of being able to watch the sexual encounters. What Humphreys did not do was identify himself as a researcher to his research subjects. Instead, he watched his subjects for several months, getting to know several of them, learning more about the tearoom trade practice, and without the knowledge of his research subjects, jotting down their license plate numbers as they pulled into or out of the parking lot near the restroom.

After participating as a watch queen, with the help of several insiders who had access to motor vehicle registration information, Humphreys used those license plate numbers to obtain the names and home addresses of his research subjects. Then, disguised as a public health researcher, Humphreys visited his subjects in their homes and interviewed them about their lives and their health. Humphreys’ research dispelled a good number of myths and stereotypes about the tearoom trade and its participants. He learned, for example, that over half of his subjects were married to women and many of them did not identify as gay or bisexual.^[19]

Once Humphreys’ work became public, there was some major controversy at his home university where the chancellor tried to have his degree revoked. Some scientists and members of the public, as it raised public concerns about the purpose and conduct of how  about how social science research was conducted and for what purpose. In addition, the Washington Post journalist Nicholas von Hoffman wrote the following warning about “sociological snoopers”:

We are so preoccupied with defending our privacy against insurance investigators, dope sleuths, counterespionage men, divorce detectives and credit checkers, that we overlook the social scientists behind the hunting blinds who’re also peeping into what we thought were our most private and secret lives. But they are there, studying us, taking notes, getting to know us, as indifferent as everybody else to the feeling that to be a complete human involves having an aspect of ourselves that’s unknown (von Hoffman, 1970).^[20]

In the original version of his report, Humphreys defended the ethics of his actions. In 2008, years after Humphreys’ death, his book was reprinted with the addition of a retrospect on the ethical implications of his work. In his written reflections on his research and the fallout from it, Humphreys maintained that his tearoom observations constituted ethical research on the grounds that those interactions occurred in public places. But Humphreys added that he would conduct the second part of his research differently. Rather than trace license numbers and interview unwitting tearoom participants in their homes under the guise of public health research, Humphreys instead would spend more time in the field and work to cultivate a pool of informants. Those informants would know that he was a researcher and would be able to fully consent to being interviewed. In the end, Humphreys concluded “there is no reason to believe that any research subjects have suffered because of my efforts, or that the resultant demystification of impersonal sex has harmed society” (Humphreys, 2008, p. 231).^[21]

Today, given increasing regulation of social scientific research, chances are slim that a researcher would be allowed to conduct a project similar to Humphreys’. Some argue that Humphreys’ research was deceptive, put his subjects at risk of losing their families and their positions in society, and was therefore unethical (Warwick, 1973; Warwick, 1982).^[22] Others suggest that Humphreys’ research “did not violate any premise of either beneficence or the sociological interest in social justice” and that the benefits of Humphreys’ research, namely the dissolution of myths about the tearoom trade specifically and human sexual practice more generally, outweigh the potential risks associated with the work (Lenza, 2004, p. 23).^[23] What do you think, and why?

These and other studies led to increasing public awareness of and concern about research on human subjects.

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One such study is the Tuskegee Syphilis Experiment, conducted in Alabama from the 1930s to the 1970s. The goal of the study was to understand the natural progression of syphilis in human beings. Investigators working for the Public Health Service enrolled hundreds of poor African American men in the study, some of whom had been diagnosed with syphilis and others who had not. Even after effective syphilis treatment was identified in the 1940s, research participants were denied treatment so that researchers could continue to observe the progression of the disease. The study came to an end in 1972 after knowledge of the experiment became public. In 1997, President Clinton publicly apologized on behalf of the American people for the study (http://clinton4.nara.gov/textonly/New/Remarks/Fri/19970516-898.html).

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A particularly tragic example is the Tuskegee syphilis study conducted by the U.S. Public Health Service from 1932 to 1972 (Reverby, 2009). The participants in this study were poor African American men in the vicinity of Tuskegee, Alabama, who were told that they were being treated for “bad blood.” Although they were given some free medical care, they were not treated for their syphilis. Instead, they were observed to see how the disease developed in untreated patients. Even after the use of penicillin became the standard treatment for syphilis in the 1940s, these men continued to be denied treatment without being given an opportunity to leave the study. The study was eventually discontinued only after details were made known to the general public by journalists and activists. It is now widely recognized that researchers need to consider issues of justice and fairness at the societal level.

In 1997—65 years after the Tuskegee Syphilis Study began and 25 years after it ended—President Bill Clinton formally apologized on behalf of the US government to those who were affected. Here is an excerpt from the apology:

So today America does remember the hundreds of men used in research without their knowledge and consent. We remember them and their family members. Men who were poor and African American, without resources and with few alternatives, they believed they had found hope when they were offered free medical care by the United States Public Health Service. They were betrayed.

Researchers must respect people’s rights and dignity as human beings. One element of this is respecting their autonomy—their right to make their own choices and take their own actions free from coercion. Of fundamental importance here is the concept of informed consent. This means that researchers obtain and document people’s agreement to participate in a study after having informed them of everything that might reasonably be expected to affect their decision. Consider the participants in the Tuskegee study. Although they agreed to participate in the study, they were not told that they had syphilis but would be denied treatment for it. Had they been told this basic fact about the study, it seems likely that they would not have agreed to participate. Likewise, had participants in Milgram’s study been told that they might be “reduced to a twitching, stuttering wreck,” it seems likely that many of them would not have agreed to participate. In neither of these studies did participants give true informed consent.

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