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3.1 Research on Humans
- Define the term human subjects.
- Describe and provide examples of nonhuman subjects that sociologists might examine.
- Provide a brief outline of the history of research on human subjects.
- Define institutional review boards and describe their purpose.
In 1998, actor Jim Carey starred in the movie The Truman Show.You can read a brief synopsis of the film at http://www.imdb.com/title/tt0120382. At first glance, the film appears to depict a perfect sociological experiment. Just imagine the possibilities if we could control every aspect of a person’s life, from how and where that person lives to where he or she works to whom he or she marries. Of course, keeping someone in a bubble, controlling every aspect of his or her life, and sitting back and watching would be highly unethical (not to mention illegal). However, the movie clearly inspires thoughts about the differences between sociological research and research on nonhumans. One of the most exciting—and most challenging—aspects of conducting sociological research is the fact that (at least much of the time) our subjects are living human beings whose free will and human rights will always have an impact on what we are able to research and how we are able to conduct that research.
Human Research Versus Nonhuman Research
While all research comes with its own set of ethical concerns, those associated with research conducted on human subjectsA living individual about whom an investigator (whether professional or student) conducting research obtains (a) data through intervention or interaction with the individual or (b) identifiable private information. vary dramatically from those of research conducted on nonliving entities. The US Department of Health and Human Services 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” (1993).US Department of Health and Human Services. (1993). Institutional review board guidebook glossary. Retrieved from http://www.hhs.gov/ohrp/archive/irb/irb_glossary.htm
Sociologists study human subjects through such methods as one-on-one, in-person interviews.
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. In sociology, nonhuman research subjects typically include sources such as newspapers, historical documents, advertisements, 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. However, there are ethical considerations that all researchers must consider regardless of their research subject. We’ll discuss those considerations in addition to concerns that are unique to research on human subjects.
Trash is one kind of nonhuman subject that social scientists might examine.
A Historical Look at Research on Humans
Research on humans hasn’t always been regulated in the way that it is today. The earliest documented cases of research using human subjects are of medical vaccination trials (Rothman, 1987).Rothman, D. J. (1987). Ethics and human experimentation. The New England Journal of Medicine, 317, 1195–1199. 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).One little-known fact, as described by Faden and Beauchamp in their 1986 book, is that at the very time that the Nazis conducted their horrendous experiments, Germany did actually have written regulations specifying that human subjects must clearly and willingly consent to their participation in medical research. Obviously these regulations were completely disregarded by the Nazi experimenters, but the fact that they existed suggests that efforts to regulate the ethical conduct of research, while necessary, are certainly not sufficient for ensuring that human subjects’ rights will be honored. Faden, R. R., & Beauchamp, T. L. (1986). A history and theory of informed consent. Oxford, UK: Oxford University Press. The trials, conducted in Nuremberg, Germany, resulted in the creation of the Nuremberg CodeA 10-point set of research ethics principles developed following the trials of Nazi criminals who conducted human experimentation on concentration camp inmates., 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)Milgram, S. (1974). Obedience to authority: An experimental view. New York, NY: Harper & Row. 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).Ogden, R. (2008). Harm. In L. M. Given (Ed.), The sage encyclopedia of qualitative research methods (pp. 379–380). Los Angeles, CA: Sage. 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.
Stanley Milgram led his research participants to believe that they were administering real electric shock to other subjects.
Laud Humphreys conducted his observations in public restrooms.
Around the same time that Milgram conducted his experiments, sociology graduate student Laud Humphreys (1970)Humphreys, L. (1970). Tearoom trade: Impersonal sex in public places. London, UK: Duckworth. was collecting data for his dissertation research on the tearoom trade, 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,” the person who keeps an eye out for police and gets the benefit of being able to watch the sexual encounters, in a local park restroom where the tearoom trade was known to occur. 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. Some time 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’s 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.Humphreys’s research is still relevant today. In fact, as the 2007 arrest of Idaho Senator Larry Craig in a public restroom at the Minneapolis–St. Paul airport attests, undercover police operations targeting tearoom activities still occur, more than 40 years after Humphreys conducted his research. Humphreys’s research is also frequently cited by attorneys who represent clients arrested for lewd behavior in public restrooms.
Once Humphreys’s work became public, the result was some major controversy at his home university (e.g., the chancellor tried to have his degree revoked), among sociologists in general, and among members of the public, as it raised public concerns about the purpose and conduct of sociological research. In addition, the Washington Post journalist Nicholas von Hoffman wrote the following warning about “sociological snoopers”:
We’re 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, 2008)Von Hoffman, N. (1970, January 30). Sociological snoopers. The Washington Post, p. B1.
In the original version of his report, Humphreys defended the ethics of his actions. In 2008, years after Humphreys’s death, his book was reprinted with the addition of a retrospect on the ethical implications of his work.Humphreys, L. (2008). Tearoom trade: Impersonal sex in public places, enlarged edition with a retrospect on ethical issues. New Brunswick, NJ: AldineTransaction. 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 that “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” (p. 231).Humphreys, L. (2008). Tearoom trade: Impersonal sex in public places, enlarged edition with a retrospect on ethical issues. New Brunswick, NJ: AldineTransaction.
As should be evident by now, there is no clear or easy answer to the question of whether Humphreys conducted ethical research. Today, given increasing regulation of social scientific research, chances are slim that a sociologist would be allowed to conduct a project similar to Humphreys’s. Some argue that Humphreys’s 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).Warwick, D. P. (1973). Tearoom trade: Means and ends in social research. Hastings Center Studies, 1, 39–49. See also Warwick, D. P. (1982). Types of harm in social research. In T. L. Beauchamp, R. R. Faden, R. J. Wallace Jr., & L. Walters (Eds.), Ethical issues in social science research. Baltimore, MD: Johns Hopkins University Press. Others suggest that Humphreys’s research “did not violate any premise of either beneficence or the sociological interest in social justice” and that the benefits of Humphreys’s 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).Lenza, M. (2004). Controversies surrounding Laud Humphreys’ tearoom trade: An unsettling example of politics and power in methodological critiques. International Journal of Sociology and Social Policy, 24, 20–31. See also Nardi, P. M. (1995). “The breastplate of righteousness”: Twenty-five years after Laud Humphreys’ Tearoom trade: Impersonal sex in public places. Journal of Homosexuality, 30, 1–10. What do you think, and why?
These and other studies (Reverby, 2009)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). For more on the Tuskegee Syphilis Experiment, see Reverby, S. M. (2009). Examining Tuskegee: The infamous syphilis study and its legacy. Chapel Hill, NC: University of North Carolina Press. led to increasing public awareness of and concern about research on human subjects. In 1974, the US Congress enacted the National Research Act, which created the National Commission for the Protection of Human Subjects in Biomedical and Behavioral Research. The commission produced The Belmont Report, a document outlining basic ethical principles for research on human subjects (National Commission for the Protection of Human Subjects in Biomedical and Behavioral Research, 1979).National Commission for the Protection of Human Subjects in Biomedical and Behavioral Research. (1979). The Belmont report: Ethical principles and guidelines for the protection of human subjects of research. Retrieved from http://ohsr.od.nih.gov/guidelines/belmont.html The National Research Act also required that all institutions receiving federal support establish institutional review boards (IRBs)An interdisciplinary review committee tasked with protecting the rights of human research subjects by weighing the relative costs and benefits of proposed research and making decisions about whether said research may be carried out at their organization. to protect the rights of human research subjects (1974).National Research Act of 1974, Pub. L. no. 93-348 Stat 88. (1974). The act can be read at http://history.nih.gov/research/downloads/PL93-348.pdf. Since that time, many organizations that do not receive federal support but where research is conducted have also established review boards to evaluate the ethics of the research that they conduct.
Institutional Review Boards
IRBs are tasked with ensuring that the rights and welfare of human research subjects will be protected at all institutions, including universities, hospitals, nonprofit research institutions, and other organizations, that receive federal support for research. IRBs typically consist of members from a variety of disciplines, such as sociology, economics, education, social work, and communications (to name a few). Most IRBs also include representatives from the community in which they reside. For example, representatives from nearby prisons, hospitals, or treatment centers might sit on the IRBs of university campuses near them. The diversity of membership helps to ensure that the many and complex ethical issues that may arise from human subjects research will be considered fully and by a knowledgeable and experienced panel. Investigators conducting research on human subjects are required to submit proposals outlining their research plans to IRBs for review and approval prior to beginning their research. Even students who conduct research on human subjects must have their proposed work reviewed and approved by the IRB before beginning any research (though, on some campuses, some exceptions are made for classroom projects that will not be shared outside of the classroom).
Institutional review boards weigh the relative risks and benefits of research and protect the rights of human research subjects.
It may surprise you to hear that IRBs are not always popular or appreciated by researchers. Who wouldn’t want to conduct ethical research, you ask? In some cases, the concern is that IRBs are most well versed in reviewing biomedical and experimental research, neither of which is particularly common within sociology. Much sociological research, especially qualitative research, is open ended in nature, a fact that can be problematic for IRBs. The members of IRBs often want to know in advance exactly who will be observed, where, when, and for how long, whether and how they will be approached, exactly what questions they will be asked, and what predictions the researcher has for her or his findings. Providing this level of detail for a yearlong participant observation within an activist group of 200-plus members, for example, would be extraordinarily frustrating for the researcher in the best case and most likely would prove to be impossible. Of course, IRBs do not intend to have researchers avoid studying controversial topics or avoid using certain methodologically sound data-collection techniques, but unfortunately, that is sometimes the result. The solution is not to do away with review boards, which serve a necessary and important function, but instead to help educate IRB members about the variety of social scientific research methods and topics covered by sociologists and other social scientists.
- The fact that many of our research subjects in sociology are human presents a unique set of challenges and opportunities when it comes to conducting ethical research.
- Research on human subjects has not always been regulated to the extent that it is today.
- All institutions receiving federal support for research must have an IRB. Organizations that do not receive federal support but where research is conducted also often include IRBs as part of their organizational structure.
- Read the 10 principles of the Nuremberg Code at the National Institutes of Health website: http://ohsr.od.nih.gov/guidelines/nuremberg.html. Consider how these principles apply to sociological research.
- Check out the IRB on your campus. Most IRBs have websites that contain useful information about the review process, membership, specific campus rules and regulations, and training. How does the IRB on your campus operate? Who are its members?
- Watch the 2004 film Kinsey. How might your campus’s IRB respond to Alfred Kinsey’s research were he to submit a proposal for his work today? Why?
- Read about Professor Jin Li’s 2011 lawsuit against Brown University, whose IRB barred Li from using data she had collected in a study of Chinese American children’s learning beliefs and socialization: http://www.browndailyherald.com/professor-sues-u-over-research-protocol-1.2518118#.Tyx7sCOQ1Lc. What is your opinion of this case? Should Li be allowed to use her data? Why or why not?