Would it surprise you learn that scientists who conduct research may withhold effective treatments from individuals with diseases? Perhaps it wouldn’t surprise you, since you may have heard of the Tuskegee Syphilis Experiment, in which treatments for syphilis were knowingly withheld from African-American participants for decades. Would it surprise you to learn that the practice of withholding treatment continues today? Multiple studies in the developing world continue to use placebo control groups in testing for cancer screenings, cancer treatments, and HIV treatments (Joffe & Miller, 2014). ^[1] What standards would you use to judge withholding treatment as ethical or unethical? Most importantly, how can you make sure that your study respects the human rights of your participants?

Chapter Outline

• 3.1 Research on humans
• 3.2 Specific ethical issues to consider
• 3.3 Ethics at micro, meso, and macro levels
• 3.4 The practice of science versus the uses of science

In 1998, actor Jim Carey starred in the movie The Truman Show. At first glance, the film appears to depict a perfect research 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 they work to whom they marry. Of course, keeping someone in a bubble, controlling every aspect of their life, and sitting back and watching would be highly unethical (not to mention illegal). However, the movie clearly inspires thoughts about the differences between scientific research and research on nonhumans. One of the most exciting—and most challenging—aspects of conducting social work 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 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). Some 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 two terms interchangeably.

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, clinical notes, 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.

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). 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.  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 science research.

Medical scientists are not the only researchers who have conducted questionable research on humans. In the 1960s, psychologist Stanley Milgram (1974) 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). A reaction of emotional distress is understandable. The realization that you are 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) was collecting data for his dissertation research 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,” who is 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.

Sometime 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. ^[1]

Once Humphreys’ work became public, the result was some major controversy at his home university (e.g., the chancellor tried to have his degree revoked), among scientists in general, and among members of the public, as it raised public concerns about the purpose and conduct of social science research. In addition, the WashingtonPost journalist Nicholas von Hoffman wrote the following warning about “sociological snoopers”:

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).

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). 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). ^[2] What do you think, and why?

In addition to these studies, other research like the Tuskegee Syphilis Experiment led to increasing public awareness of and concern about research on human subjects (Reverby, 2009). The Tuskegee Syphilis Experiment was 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.

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). The National Research Act of 1974 also required that all institutions receiving federal support establish institutional review boards (IRBs) to protect the rights of human research subjects. 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 they conduct.

Institutional Review Boards (IRBs)

 Institutional Review Boards, or 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).

The IRB has three levels of review, defined in statute by the USDHHS. Exempt review is the lowest level of review. Studies that are considered exempt expose participants to the least potential for harm and often involves little participation by human subjects. In social work, exempt studies often examine data that is publicly available or secondary data from another researcher that has been de-identified by the person who collected it. Expedited review is the middle level of review. Studies considered under expedited review do not have to go before the full IRB board because they expose participants to minimal risk. However, the studies must be thoroughly reviewed by a member of the IRB committee.  While there are many types of studies that qualify for expedited review, the most relevant to social workers include the use of existing medical records, recordings (such as interviews) gathered for research purposes, and research on individual group characteristics or behavior. Finally, the highest level of review is called a full board review. A full board review will involve multiple members of the IRB evaluating your proposal. When researchers submit a proposal under full board review, the full IRB board will meet, discuss any questions or concerns with the study, invite the researcher to answer questions and defend their proposal, and vote to approve the study or send it back for revision. Full board proposals pose greater than minimal risk to participants. They may also involve the participation of vulnerable populations, or people who need additional protection from the IRB. Vulnerable populations include pregnant women, prisoners, children, people with cognitive impairments, people with physical disabilities, employees, and students. While some of these populations can fall under expedited review, they will usually require the full IRB to approve their study.

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 social work. Much social work 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 findings. Providing this level of detail for a year-long 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 social workers and other social scientists.

As should be clear by now, conducting research on humans presents a number of unique ethical considerations. Human research subjects must be given the opportunity to consent to their participation in research, fully informed of the study’s risks, benefits, and purpose. Further, subjects’ identities and the information they share should be protected by researchers. Of course, how consent and identity protection are defined may vary by individual researcher, institution, or academic discipline. In section 3.1, we examined the role that institutions play in shaping research ethics. In this section, we’ll take a look at a few specific topics that individual researchers and social workers in general must consider before embarking on research with human subjects.

Informed consent

 A norm of voluntary participation is presumed in all social work research projects. In other words, we cannot force anyone to participate in our research without that person’s knowledge or consent (so much for that Truman Show experiment). Researchers must therefore design procedures to obtain subjects’ informed consent to participate in their research. Informed consent is defined as a subject’s voluntary agreement to participate in research based on a full understanding of the research and of the possible risks and benefits involved. Although it sounds simple, ensuring that one has actually obtained informed consent is a much more complex process than you might initially presume.

The first requirement is that, in giving their informed consent, subjects may neither waive nor even appear to waive any of their legal rights. Subjects also cannot release a researcher, her sponsor, or institution from any legal liability should something go wrong during the course of their participation in the research (USDHHS,2009). ^[1] Because social work research does not typically involve asking subjects to place themselves at risk of physical harm by, for example, taking untested drugs or consenting to new medical procedures, social work researchers do not often worry about potential liability associated with their research projects. However, their research may involve other types of risks.

For example, what if a social work researcher fails to sufficiently conceal the identity of a subject who admits to participating in a local swinger’s club? In this case, a violation of confidentiality may negatively affect the participant’s social standing, marriage, custody rights, or employment. Social work research may also involve asking about intimately personal topics, such as trauma or suicide that may be difficult for participants to discuss. Participants may re-experience traumatic events and symptoms when they participate in a study. Even if you are careful to fully inform your participants of all risks before they consent to the research process, you can probably empathize with participants thinking they could bear talking about a difficult topic and then finding it too overwhelming once they start. In cases like these, it is important for a social work researcher to have a plan to provide supports. This may mean providing referrals to counseling supports in the community or even calling the police if the participant is an imminent danger to themselves or others.

It is vital that social work researchers explain their mandatory reporting duties in the consent form and ensure participants understand them before they participate. Researchers should also emphasize to participants that they can stop the research process at any time or decide to withdraw from the research study for any reason. Importantly, it is not the job of the social work researcher to act as a clinician to the participant. While a supportive role is certainly appropriate for someone experiencing a mental health crisis, social workers must ethically avoid dual roles. Referring a participant in crisis to other mental health professionals who may be better able to help them is preferred.

Beyond the legal issues, most IRBs require researchers to share some details about the purpose of the research, possible benefits of participation, and, most importantly, possible risks associated with participating in that research with their subjects. In addition, researchers must describe how they will protect subjects’ identities; how, where, and for how long any data collected will be stored; and whom to contact for additional information about the study or about subjects’ rights. All this information is typically shared in an informed consent form that researchers provide to subjects. In some cases, subjects are asked to sign the consent form indicating that they have read it and fully understand its contents. In other cases, subjects are simply provided a copy of the consent form and researchers are responsible for making sure that subjects have read and understand the form before proceeding with any kind of data collection. Figure 3.1 showcases a sample informed consent form from a research project on child-free adults. Note that this consent form describes a risk that may be unique to the particular method of data collection being employed: focus groups.

Figure 3.1 Sample informed consent form

One last point to consider when preparing to obtain informed consent is that not all potential research subjects are considered equally competent or legally allowed to consent to participate in research. Subjects from vulnerable populations may be at risk of experiencing undue influence or coercion.^[2] The rules for consent are more stringent for vulnerable populations. For example, minors must have the consent of a legal guardian in order to participate in research. In some cases, the minors themselves are also asked to participate in the consent process by signing special, age-appropriate “assent” forms designed specifically for them. Prisoners and parolees also qualify as vulnerable populations. Concern about the vulnerability of these subjects comes from the very real possibility that prisoners and parolees could perceive that they will receive some highly desired reward, such as early release, if they participate in research. Another potential concern regarding vulnerable populations is that they may be underrepresented in research, and even denied potential benefits of participation in research, specifically because of concerns about their ability to consent. So, on the one hand, researchers must take extra care to ensure that their procedures for obtaining consent from vulnerable populations are not coercive. The procedures for receiving approval to conduct research on these groups may be more rigorous than that for non-vulnerable populations. On the other hand, researchers must work to avoid excluding members of vulnerable populations from participation simply on the grounds that they are vulnerable or that obtaining their consent may be more complex. While there is no easy solution to this double-edged sword, an awareness of the potential concerns associated with research on vulnerable populations is important for identifying whatever solution is most appropriate for a specific case.

Protection of identities

As mentioned earlier, the informed consent process includes the requirement that researchers outline how they will protect the identities of subjects. This aspect of the process, however, is one of the most commonly misunderstood aspects of research.

In protecting subjects’ identities, researchers typically promise to maintain either the anonymity or confidentiality of their research subjects. Anonymity is the more stringent of the two. When a researcher promises anonymity to participants, not even the researcher is able to link participants’ data with their identities. Anonymity may be impossible for some social work researchers to promise because several of the modes of data collection that social workers employ. Face-to-face interviewing means that subjects will be visible to researchers and will hold a conversation, making anonymity impossible. In other cases, the researcher may have a signed consent form or obtain personal information on a survey and will therefore know the identities of their research participants. In these cases, a researcher should be able to at least promise confidentiality to participants.

Offering confidentiality means that some identifying information on one’s subjects is known and may be kept, but only the researcher can link participants with their data and she promises not to do so publicly. Confidentiality in research is quite similar to confidentiality in clinical practice. You know who your clients are, but others do not. You agree to keep their information and identity private. As you can see under the “Risks” section of the consent form in Figure 3.1, sometimes it is not even possible to promise that a subject’s confidentiality will be maintained. This is the case if data are collected in public or in the presence of other research participants (e.g., in the course of a focus group). Participants who social work researchers deem to be of imminent danger to self or others or those that disclose abuse of children and other vulnerable populations fall under a social worker’s duty to report. Researchers must then violate confidentiality to fulfill their legal obligations.

Protecting research participants’ identities is not always a simple prospect, especially for those conducting research on stigmatized groups or illegal behaviors. Sociologist Scott DeMuth learned that all too well when conducting his dissertation research on a group of animal rights activists. As a participant observer, DeMuth knew the identities of his research subjects. So when some of his research subjects vandalized facilities and removed animals from several research labs at the University of Iowa, a grand jury called on Mr. DeMuth to reveal the identities of the participants in the raid. When DeMuth refused to do so, he was jailed briefly and then charged with conspiracy to commit animal enterprise terrorism and cause damage to the animal enterprise (Jaschik, 2009).

Publicly, DeMuth’s case raised many of the same questions as Laud Humphreys’ work 40 years earlier. What do social scientists owe the public? Is DeMuth, by protecting his research subjects, harming those whose labs were vandalized? Is he harming the taxpayers who funded those labs? Or is it more important that DeMuth emphasize what he owes his research subjects, who were told their identities would be protected? DeMuth’s case also sparked controversy among academics, some of whom thought that as an academic himself, DeMuth should have been more sympathetic to the plight of the faculty and students who lost years of research as a result of the attack on their labs. Many others stood by DeMuth, arguing that the personal and academic freedom of scholars must be protected whether we support their research topics and subjects or not. DeMuth’s academic adviser even created a new group, Scholars for Academic Justice, to support DeMuth and other academics who face persecution or prosecution as a result of the research they conduct. What do you think? Should DeMuth have revealed the identities of his research subjects? Why or why not?

social work ethics and research

Often times, specific disciplines will provide their own set of guidelines for protecting research subjects and, more generally, for conducting ethical research. For social workers, the National Association of Social Workers (NASW) Code of Ethics section 5.02 describes the responsibilities of social workers in conducting research. Summarized below, these responsibilities are framed as part of a social worker’s responsibility to the profession. As representative of the social work profession, it is your responsibility to conduct and use research in an ethical manner.

A social worker should:

• Monitor and evaluate policies, programs, and practice interventions
• Contribute to the development of knowledge through research
• Keep current with the best available research evidence to inform practice
• Ensure voluntary and fully informed consent of all participants
• Not engage in any deception in the research process
• Allow participants to withdraw from the study at any time
• Provide access for participants to appropriate supportive services
• Protect research participants from harm
• Maintain confidentiality
• Report findings accurately
• Disclose any conflicts of interest

internet research

It is increasingly common for the internet to be used as a tool for conducting research and as a source of data such as the content of websites, blogs, or discussion boards.  Research ethical principles apply to internet research, but there are ethical considerations that are unique to internet research.

Some of the major tensions and considerations of internet research include defining human subjects, differentiating between what is public and what is private, and making appropriate distinctions between individuals and data.  These tensions lead to new concerns about informed consent, confidentiality, privacy, and harm when conducting internet research.  These are important considerations because they link to the fundamental ethical principle of minimizing harm. Does the connection between one’s online data and his or her physical person enable psychological, economic, or physical, harm?

• Defining Human Subjects: In internet research, “human subject” has never been a good fit for describing many internet-based research environments.  For example, should authors of web content be considered human subjects? This question is important because many regulatory bodies do not conduct ethical reviews if they determine that the research does not involve human subjects.  Internet researchers have not reached a consensus about how to define the term “human subjects.”  In fact, some contend that defining human subjects may not be as important as defining other terms such as harm, vulnerability, personally identifiable information, and so forth.
• Differentiating between Public and Private: Individual and cultural definitions and expectations of privacy are ambiguous, contested, and changing. On the internet, people may operate in public spaces but maintain strong perceptions or expectations of privacy. Or, they may acknowledge that the substance of their communication is public, but that the specific context in which it appears implies restrictions on how that information is – or should be – used by other parties. For example, a user may feel comfortable broadcasting tweets to a public audience, following the norms of the Twitter community. However, to find out that these ‘public’ tweets had been collected within a data set and combed over by a researcher could possibly feel like an encroachment on privacy. Despite what a simplified conceptualization of “public/private” might offer, there is no categorical way to discern all eventual harm. Data aggregators or search tools make information accessible to a wider public than what might have been originally intended. Social, academic, or regulatory delineations of public and private as a clearly recognizable binary no longer holds in everyday practice.
• Distinctions between individuals and data: The internet complicates the fundamental research ethics question of personhood. Is an avatar a person? Is one’s digital information an extension of the self? In the U.S. regulatory system, the primary question has generally been: Are we working with human subjects or not? If information is collected directly from individuals, such as an email exchange, instant message, or an interview in a virtual world, we are likely to naturally define the research scenario as one that involves a person. If the connection between the object of research and the person who produced it is indistinct, there may be a tendency to define the research scenario as one that does not involve any persons. This may oversimplify the situation–the question of whether one is dealing with a human subject is different from the question about whether information is linked to individuals: Can we assume a person is wholly removed from large data pools? For example, a data set containing thousands of tweets or an aggregation of surfing behaviors collected from a bot is perhaps far removed from the persons who engaged in these activities. In these scenarios, it is possible to forget that there was ever a person somewhere in the process that could be directly or indirectly impacted by the research. Yet there is considerable evidence that even ‘anonymized’ datasets that contain enough personal information can result in individuals being identifiable. Scholars and technologists continue to wrestle with how to adequately protect individuals when analyzing such datasets (Sweeny, 2009; Narayanan & Shmatikov, 2008, 2009).

These three issues represent ongoing tensions for internet research. Although researchers might like straightforward answers to questions such as “Will capturing a person’s Tweets cause them harm?” or “Is a blog a public or private space,” the uniqueness and almost endless range of specific situations has defied attempts to provide universal answers.  The Association of Internet Researchers (Markham & Buchanan, 2012) has created a guide called  Ethical Decision-Making and Internet Researchthat provides a detailed discussion of these issues. 

One useful way to think about the breadth of ethical questions that might arise out of any research project is to think about potential issues from the perspective of different analytical levels. In Chapter 1, you learned about the micro-, meso-, and macro-levels of inquiry and how a researcher’s specific point of focus might vary depending on her level of inquiry. Here we’ll apply this ecological framework to a discussion of research ethics. Within most research projects, there are specific questions that arise for researchers at each of these three levels.

At the micro-level, researchers must consider their own conduct and the rights of individual research participants. For example, did Stanley Milgram behave ethically when he allowed research participants to think that they were administering electronic shocks to fellow participants? Did Laud Humphreys behave ethically when he deceived his research subjects about his own identity? Were the rights of individuals in these studies protected? The questions posed here are the sort that you will want to ask yourself as a researcher when considering ethics at the micro-level.

At the meso-level, researchers should think about their duty to the community. How will the results of your study impact your target population? Ideally, your results will benefit your target population by identifying important areas for social workers to intervene. However, it is possible that your study may perpetuate negative stereotypes about your target population or damage its reputation. Indigenous people in particular have highlighted how historically social science has furthered marginalization of indigenous peoples (Smith, 2013). In addition to your target population, you must also consider your responsibilities to the profession of social work. When you engage in social work research, you stand on the reputation the profession has built for over a century. Attending to research ethics helps to fulfill your responsibilities to the profession, in addition to your target population.

Finally, at the macro-level, researchers should consider their duty to, and the expectations of, society. Perhaps the most high-profile case involving macro-level questions of research ethics comes from debates over whether to use data gathered by, or cite published studies based on data gathered from, the Nazis in the course of their unethical and horrendous experiments on humans during World War II (Moe, 1984). Some argue that because the data were gathered in such an unquestionably unethical manner, they should never be used. Further, some who argue against using the Nazi data point out that not only were the experiments immoral but the methods used to collect data were also scientifically questionable. The data, say these people, are neither valid nor reliable and should therefore not be used in any current scientific investigation (Berger, 1990).

On the other hand, some people argue that data themselves are neutral; that “information gathered is independent of the ethics of the methods and that the two are not linked together” (Pozos, 1992, p. 104). Others point out that not using the data could inadvertently strengthen the claims of those who deny that the Holocaust ever happened. In his striking statement in support of publishing the data, medical ethics professor Velvl Greene (1992) says,

While debates about the use of data collected by the Nazis are typically centered on medical scientists’ use of them, there are conceivable circumstances under which these data might be used by social scientists. Perhaps, for example, a social scientist might wish to examine contemporary reactions to the experiments. Or perhaps the data could be used in a study of the sociology of science. What do you think? Should data gathered by the Nazis be used or cited today? What arguments can you make in support of your position, and how would you respond to those who disagree? Table 3.1 summarizes the key questions that researchers might ask themselves about the ethics of their research at each level of inquiry.

Research ethics has to do with both how research is conducted and how findings from that research are used. In this section, we’ll consider research ethics from both angles.

Doing science the ethical way

As you should now be aware, researchers must consider their own personal ethical principles in addition to following those of their institution, their discipline, and their community. We’ve already considered many of the ways that social workers strive to ensure the ethical practice of research, such as informing and protecting subjects. But the practice of ethical research doesn’t end once subjects have been identified and data have been collected. Social workers must also fully disclose their research procedures and findings. This means being honest about how research subjects were identified and recruited, how exactly data were collected and analyzed, and ultimately, what findings were reached.

If researchers fully disclose how they conducted their research, then those who use their work to build research projects, create social policies, or make decisions can have confidence in the work. By sharing how research was conducted, a researcher helps assure readers she has conducted legitimate research and didn’t simply come to whatever conclusions she wanted to find. A description or presentation of research findings that is not accompanied by information about research methodology is missing some relevant information. Sometimes methodological details are left out because there isn’t time or space to share them. This is often the case with news reports of research findings. Other times, there may be a more insidious reason that that important information isn’t there. This may be the case if sharing methodological details would call the legitimacy of a study into question. As researchers, it is our ethical responsibility to fully disclose our research procedures. As consumers of research, it is our ethical responsibility to pay attention to such details. We’ll discuss this more in the next section.

There’s a New Yorker cartoon that depicts a set of filing cabinets that aptly demonstrates what we don’t want to see happen with research. Each filing cabinet drawer in the cartoon is labeled differently. The labels include such headings as, “Our Facts,” “Their Facts,” “Neutral Facts,” “Disputable Facts,” “Absolute Facts,” “Bare Facts,” “Unsubstantiated Facts,” and “Indisputable Facts.” The implication of this cartoon is that one might just choose to open the file drawer of her choice and pick whichever facts one likes best. While this may occur if we use some of the unscientific ways of knowing described in Chapter 1, it is fortunately not how the discovery of facts works in social work or in any other science for that matter. There actually is a method to this madness we call research.

Honesty in research is facilitated by the scientific principle of replication. Ideally, this means that one scientist could repeat another’s study with relative ease. By replicating a study, we may become more (or less) confident in the original study’s findings. Replication is far more difficult (perhaps impossible) to achieve in the case of ethnographic studies that last months or years, but it nevertheless sets an important standard for all social scientific researchers—that we provide as much detail as possible about the processes by which we reach our conclusions.

Full disclosure also includes the need to be honest about a study’s strengths and weaknesses, both with oneself and with others. Being aware of the strengths and weaknesses of their own work can help researchers make reasonable recommendations about the next steps other researchers might consider taking in their inquiries. Awareness and disclosure of a study’s strengths and weaknesses can also help highlight the theoretical or policy implications of one’s work. In addition, openness about strengths and weaknesses helps those reading the research better evaluate the work and decide for themselves how or whether to rely on its findings. Finally, openness about a study’s sponsors is crucial. How can we effectively evaluate research without knowing who paid the bills?

The standard of replicability along with openness about a study’s strengths, weaknesses, and funders enable those who read the research to evaluate it fairly and completely. Knowledge of funding sources is often raised as an issue in medical research. Understandably, independent studies of new drugs may be more compelling to the Food and Drug Administration (FDA) than studies touting the virtues of a new drug that happen to have been funded by the company who created that drug. But medical researchers aren’t the only ones who need to be honest about their funding. If we know, for example, that a political think tank with ties to a particular party has funded some research, we can take that knowledge into consideration when reviewing the study’s findings and stated policy implications. Lastly, and related to this point, we must consider how, by whom, and for what purpose research may be used.

Using science the ethical way

Science has many uses. Here, the word “use” means the ways that science is understood and applied (as opposed to the way it is conducted). Some use science to create laws and social policies; others use it to understand themselves and those around them. Some people rely on science to improve their life conditions or those of other people, while still others use it to improve their businesses or other undertakings. In each case, the most ethical way for us to use science is to educate ourselves about the design and purpose of any studies we may wish to use or apply, to recognize our limitations in terms of scientific and methodological knowledge and how those limitations may impact our understanding of research, and to apply the findings of scientific investigation only in cases or to populations for which they are actually relevant.

Social scientists who conduct research on behalf of organizations and agencies may face additional ethical questions about the use of their research, particularly when the organization for which a study is conducted controls the final report and the publicity it receives. There is a potential conflict of interest for evaluation researchers who are employees of the agency being evaluated. A similar conflict of interest might exist between independent researchers whose work is being funded by some government agency or private foundation.

So who decides what constitutes ethical conduct or use of research? Perhaps we all do. What qualifies as ethical research may shift over time and across cultures as individual researchers; disciplinary organizations; members of society; and regulatory entities, such as institutional review boards, courts, and lawmakers all work to define the boundaries between ethical and unethical research.