Part 2: Conceptualizing your research project

6. Research ethics

Chapter Outline

  1. Human subjects research (19 minute read time)
  2. Specific ethical issues to consider (12 minute read time)
  3. Benefits and harms of research across the ecosystem (7 minute read time)
  4. Being an ethical researcher (8 minute read time)

Content warning: examples in this chapter contain references to research as numerous incidents of unethical medical experimentation (e.g. intentionally injecting diseases into unknowing participants, withholding proven treatments), social experimentation under extreme conditions (e.g. being directed to deliver electric shocks to test obedience), violations of privacy, gender and racial inequality, research with people who are incarcerated or on parole, experimentation on animals, community interactions with law enforcement, WWII, the Holocaust, and Nazi activities (especially related to research on humans).

With your literature review underway, you are ready to begin thinking in more concrete terms about your research topic. Recall our discussion in Chapter 2 on practical and ethical considerations that emerge as part of the research process. In this chapter, we will expand on the ethical boundaries that social scientists must abide by when conducting human subjects research. As a result of reading this chapter, you should have a better sense of what is possible and ethical for the research project you create.

6.1 Human subjects research

Learning Objectives

Learners will be able to

  • Understand what we mean by ethical research and why it is important
  • Understand some of the egregious ethical violations that have occurred throughout history

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 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).[2] 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, 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 all researchers are accountable to. 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 a micro, mezzo, and macro perspective.

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.

 

Would you believe that the following actions have been carried out in the name of research? I realize there was a content warning at the beginning of the chapter, but it is worth mentioning that the list below of research atrocities may be particularly upsetting or triggering.

  • intentionally froze healthy body parts of prisoners to see if they could develop a treatment for freezing[1]
  • scaled the body parts of prisoners to how best to treat soldiers who had injuries from being exposed to high temperatures[2]
  • intentionally infected healthy individuals to see if they could design effective methods of treatment for infections[3]
  • gave healthy people TB to see if they could treat it[4]
  • attempted to transplant limbs, bones, and muscles to another person to see if this was possible[5]
  • castrated and irradiated genitals to see if they could develop a faster method of sterilization[6]
  • starved people and only allowed them to drink seawater to see if they could make saline water drinkable[7]
  • artificially inseminated women with animal sperm to see what would happen[8]
  • gassed living people to document how they would die[9][10]
  • conducted cruel experiments on people and if they did not die, would kill them so they could undergo an autopsy[11]
  • refused to treat syphilis in African American men (when treatment was available) because they wanted to track the progression of the illness[12]
  • vivisected humans without anesthesia to see how illnesses that researches gave prisoners impacted their bodies[13]
  • intentionally tried to infect prisoners with the Bubonic Plague[14]
  • intentionally infected prisoners, prostitutes, soldiers, and children with syphilis to study the disease’s progression[15][16]
  • performed gynecological experiments on female slaves without anesthesia to investigate new surgical methods[17][18]

The sad fact is that not only did all of these occur, in many instances, these travesties continued for years until exposed and halted. Additionally, these examples have contributed to the formation of a legacy of distrust toward research. Specifically, many underrepresented groups have a deep distrust of agencies that implement research and are often skeptical of research findings. This has made it difficult for groups 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 don’t just happen in these extreme occurrences. 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). [3] 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). [4] The trials, conducted in Nuremberg, Germany, resulted in the creation of the , 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) [5] 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). [6] 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) [7] 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.

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.[8]

Once Humphreys’ work became public, there 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 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, 1970). [9]

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. [10] 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 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). [10]

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). [11] Others suggest that Humphreys’ research “did not violate any premise of either 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). [12] What do you think, and why?

These and other studies (Reverby, 2009) [13] led to increasing public awareness of and concern about research on human subjects. In 1974, the US Congress enacted , which created the National Commission for the Protection of Human Subjects in Biomedical and Behavioral Research. The commission produced , 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). [14] The National Research Act (1974) [15] also required that all institutions receiving federal support establish 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 that they conduct. IRBs are overseen by the federal .

The Belmont Report

As mentioned above, The Belmont Report is a federal document that outlines the foundational principles that guide the ethical practice of research in the United States. These ethical principles include: respect for persons, beneficence, and justice. Each of these terms has specific implications as they are applied to the practice of research. These three principles arose as a response to many of the mistreatment and abuses that have been previously discussed and provide important guidance as researchers consider how they will construct and conduct their research studies. As you are crafting your research proposal, makes sure you are mindful of these important ethical guidelines.

Respect for Persons

As social workers, our professional code of ethics requires that we recognize and respect the “inherent dignity and worth of the person”[19]. This is very similar to the ethical research principle of . According to this principle, as researchers, we need to treat all research participants with respect, dignity and inherent autonomy. This is reflected by ensuring that participants have self-determination to make informed decisions about their participation in research, that they have a clear understanding of what they will be asked to do and any risks involved, and that their participation is voluntary and can be stopped at any time. Furthermore, for those persons who may have (e.g. children, people who are incarcerated), extra protections must be built in to these research studies to ensure that respect for persons continues to be demonstrated towards these groups, as they may be especially vulnerable to exploitation and through the research process. A critical tool in establishing respect for persons in your research is the process, which will be discussed in more detail below.

Beneficence

You may not be familiar with this word yet, but the concept is pretty straightforward. The main idea with is that the intent of research is to do good. As researchers, to accomplish this, we seek to maximize benefits and minimize risks. Benefits may be something good or advantageous directly received by the research participant, or they may represent a broader good to a wider group of people or the scientific community at large (such as increasing knowledge about the topic or social problem that you are studying). Risks are potential physical, social, or emotional harm that may come about as a response to participation in a study. These risks may be more immediate (e.g. risk of identifying information about a participant being shared, or a participant being upset or triggered by a particular question), or long-term (e.g. some aspect about the person could be shared that could lead to long-term stigmatization). As researchers, we need to think about risk that might be experienced by the individual, but also risks that might be directed towards the community or population(s) the individual may represent. For instance, if our study is specifically focused on surveying single parents, we need to consider how the sharing of our findings might impact this group and how they are perceived. It is a very rare study in which there is no risk to participants. However, a well-designed and ethically sound study will seek to minimize these risks, provide resources to anticipate and address them, and maximize the benefits that are gained through the study.

Justice

The final ethical principle we need to cover is justice. While you likely have some idea what is, for the purposes of research, justice is the idea that the benefits and the burdens of research are distributed fairly across populations and groups. To help illustrate the concept of justice in research, research in the area of mental health and psychology has historically been critiqued as failing to adequately represent women and people of diverse racial and ethnic groups in their samples [20]. This has created a body of knowledge that is overly representative of the white male experience, further reinforcing systems of power and privilege. In addition, consider the influence of language as it relates to research justice. If we create studies that only recruit participants fluent in English, which many studies do, we are often failing to satisfy the ethical principle of justice as it applies to people who don’t speak English. It is unrealistic to think that we can represent all people in all studies. However, we do need to thoughtfully acknowledge voices that might not be reflected in our samples and attempt to recruit diverse and representative samples whenever possible.

These three principles provide the foundation for the oversight work that is carried out by Institutional Review Boards, our next topic.

Institutional Review Boards

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, exceptions are made for student projects that will not be shared outside of the classroom).

 

The IRB has three levels of review, defined in statute by the USDHHS.

Exempt

is the lowest level of review. Studies that are considered exempt expose participants to the least potential for harm and often involve 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

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.

Full Board

Finally, the highest level of review is called a . 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 , or people who need additional protection from the IRB. Vulnerable populations include prisoners, children, people with cognitive impairments, people with physical disabilities, employees, and students. While some of these populations can fall under expedited review in some cases, they will often 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 their 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 eradicate 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.

What we have provided here is only a short summary of federal regulations and international agreements that provide the boundaries between ethical and unethical research.

Key Takeaways

  • Research on human subjects 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.
  • Researchers submit studies for IRB review at one of three different levels, depending on the level of harm the study may cause.

Exercises

  • Recall whether your project will gather data from human subjects and sketch out what the data collection process might look like.
  • Identify which level of IRB review is most appropriate for your project.
  • For many students, your professors may have existing agreements with your university’s IRB that allow students to conduct research projects outside the supervision of the IRB. Make sure that your project falls squarely within those parameters. If you feel you may be outside of such an agreement, consult with your professor to see if you will need to submit your study for IRB review before starting your project.

6.2 Specific ethical issues to consider

Learning Objectives

Learners will be able to…

  • Define informed consent, and describe how it works
  • Identify the unique concerns related to the study of vulnerable populations
  • Differentiate between anonymity and confidentiality
  • Explain the ethical responsibilities of social workers conducting research

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, and be 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 this section, we’ll take a look at a few specific topics that individual researchers must consider before embarking on research with human subjects.

Informed consent

An expectation 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. Researchers must therefore design procedures to obtain subjects’ informed consent to participate in their research. This specifically relates back to the ethical principle of respect for persons outlined in The Belmont Report.  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 that may be difficult for participants to discuss, such as trauma or suicide. Participants may re-experience traumatic events and symptoms when they participate in your study. Even if you are careful to fully inform your participants of all risks before they consent to the research process, I’m sure you can empathize with thinking you could bear talking about a difficult topic and then finding it too overwhelming once you 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 himself 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 the expectation.

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, how findings may be shared, 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. Your IRB will often provide guidance or even templates for what they expect to see included in an informed consent form. This is a document that they will inspect very closely. Table 6.1 outlines elements to include in your informed consent. While these offer a guideline for you, you should always visit your schools, IRB website to see what guidance they offer. They often provide a template that they prefer researchers to use. Using these templates ensures that you are using the language that the IRB reviewers expect to see and this can also save you time.

Table 6.1 Elements to include in your informed consent
Elements Brief description
Welcome A greeting for your participants, a few words about who you/your team are, the aim of your study
Procedures What your participants are being asked to do throughout the entire research process
Risks Any potential risks associated with your study (this is very rarely none!); also, make sure to provide resources that address or mitigate the risks (e.g. counseling services, hotlines, EAP)
Benefits Any potential benefits, either direct to participant or more broadly (indirect) to community or group; include any compensation here, as well
Privacy Brief explanation of steps taken to protect privacy.; address confidentiality or anonymity (whichever applies); also address how the results of the study may be used/disseminated
Voluntary Nature It is important to emphasize that participation is voluntary and can be stopped at any time
Contact Information You will provide your contact information as the researcher and often the contact of the IRB that is providing approval for the study
Signatures We will usually seek the signature and date of participant and researcher on these forms (unless otherwise specified and approved in your IRB application)

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. [3] 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 or that there could be punitive consequences if they choose not to participate. When a participant faces undue or excess pressure to participate by either favorable or unfavorable means, this is known as and must be avoided by researchers.

Another potential concern regarding vulnerable populations is that they may be underrepresented or left out of research opportunities, 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 with 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 ethical research dilemma, 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 research process, however, is one of the most commonly misunderstood. Furthermore, failing to protect identities is one of the greatest risks to participants in social work research studies.

In protecting subjects’ identities, researchers typically promise to maintain either the anonymity or confidentiality of their research subjects. These are two distinctly different terms and they are NOT interchangeable. Anonymity is the more stringent of the two and is very hard to guarantee in most research studies. When a researcher promises 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 due to the modes of data collection many 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  means that some identifying information is known at some time by the research team, but only the research team has access to this identifying information and this information will not be linked with their data in any publicly accessible way. 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 5.1, 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 in the course of a focus group, for example. 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.

There are a number of steps that researchers can take to protect the identities of research participants. These include, but are not limited to:

  • Collecting data in private spaces
  • Not requesting information that will uniquely identify or “out” that person as a participant
  • Assigning or
  • Keeping signed informed consent forms separate from other data provided by the participant
  • Making sure that physical data is kept in a locked and secured location, and the virtual data is encrypted or password-protected
  • Reporting data in aggregate (only discussing the data collectively, not by individual responses)

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). [4]

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 (http://sajumn.wordpress.com), 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?

Discipline-specific considerations

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 to appropriate supportive services for participants
  • Protect research participants from harm
  • Maintain confidentiality
  • Report findings accurately
  • Disclose any conflicts of interest

Key Takeaways

  • Researchers must obtain the informed consent of research participants.
  • Social workers must take steps to minimize the harms that could arise during the research process.
  • If anonymity is promised, individual participants cannot be linked with their data.
  • If confidentiality is promised, the identities of research participants cannot be revealed, even if individual participants can be linked with their data.
  • The NASW Code of Ethics includes specific responsibilities for social work researchers.

Exercises

  • Talk with your professor to see if an informed consent form is required for your research project. If documentation is required, customize the template provided by your professor or the IRB at your school, using the details of your study. If documentation on consent is not required, for example if consent is given verbally, use the templates as guides to create a guide for what you will say to participants regarding informed consent.
  • Identify whether your data will be confidential or anonymous. Describe the measures you will take to protect the identities of individuals in your study. How will you store the data? How will you ensure that no one can identify participants based on what you report in papers and presentations? Be sure to think carefully. People can be identified by characteristics such as age, gender, disability status, location, etc.

6.3 Benefits and harms of research across the ecosystem

Learning Objectives

Learners will be able to…

  • Identify and distinguish between micro-, mezzo-, and macro-level considerations with respect to the ethical conduct of social scientific research

This chapter began with a long list of harmful acts that researchers engaged in while conducting studies on human subjects. Indeed, even the last section on informed consent and protection of confidential information can be seen in light of minimizing harm and maximizing benefits. The benefits of your study should be greater than the harms. But who benefits from your research study, and who might be harmed? The first person who benefits is, most clearly, you as the researcher. You need a project to complete, be it for a grade, a grant, an academic responsibility, etc. However you need to make sure that your benefit does not come at the expense of harming others. Furthermore, research requires resources, including resources from the communities we work with. Part of being good stewards of these resources as social work researchers means that we need to engage in research that benefits the people we serve in meaningful and relevant ways. We need to consider how others are impacted by our research.

 

Box with "benefits" written in it (to the right side of scale)Box with "risks" written in it (to the left side of scale)

Micro-, mezzo-, and macro-level concerns

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 that are familiar to us as social workers. In Chapter 1, you learned about the micro-, mezzo-, 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 impact on individual research participants. For example, did Stanley Milgram behave ethically when he allowed research participants to think that they were administering electric 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? How did these participants benefit themselves from the research that was conducted? While not social workers by trade, would the actions of these two researchers hold up against our professional NASW Code of Ethics? 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 mezzo-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 and to better understand the experiences of the communities they serve. 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). [1] . Mezzo-level concerns should also address other groups or organizations that are connected to your target population. This may include the human service agencies with whom you’ve partnered for your study as well as the communities and peoples they serve. If your study reflected negatively on a particular housing project in your area, for example, will community members seek to remove it from their community? Or might it draw increased law enforcement presence that is unwanted by participants or community members? Research is a powerful tool and can be used for many purposes, not all of them altruistic. In addition, research findings can have many implications, intended and unintended. As responsible researchers, we need to do our best to thoughtfully anticipate these consequences.

Finally, at the macro-level, a researcher should consider 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). [2] Some argue that because the data were gathered in such an unquestionably unethical manner, they should never be used. The data, say these people, are neither valid nor reliable and should therefore not be used in any current scientific investigation (Berger, 1990). [3]

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). [4] 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,

Instead of banning the Nazi data or assigning it to some archivist or custodial committee, I maintain that it be exhumed, printed, and disseminated to every medical school in the world along with the details of methodology and the names of the doctors who did it, whether or not they were indicted, acquitted, or hanged.…Let the students and the residents and the young doctors know that this was not ancient history or an episode from a horror movie where the actors get up after filming and prepare for another role. It was real. It happened yesterday (p. 169–170). [5]

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?

Additionally at the macro-level, 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. Since research is public-facing, meaning that research findings are intended to be shared publicly, you are an ambassador for the profession. How you conduct yourself as a social work researcher has potential implications for how the public perceives both social work and research. As a social worker, you have a responsibility to work towards greater social, environmental, and economic justice and human rights. Your research should reflect this responsibility. Attending to research ethics helps to fulfill your responsibilities to the profession, in addition to your target population.

Table 6.2 summarizes the key questions that researchers might ask themselves about the ethics of their research at each level of inquiry.

Table 6.2 Key questions for researchers about the ethics of their research at each level of inquiry.
Level of inquiry Focus Key ethics questions for researchers to ask themselves
Micro-level Individual Does my research interfere with the individual’s right to privacy?
Could my research offend subjects in any way, either the collection of data or the sharing of findings?
Could my research cause emotional distress to any of my subjects?

In what ways does my research benefit me?

In what ways does my research benefit participants?

Has my own conduct been ethical throughout the research process?
Mezzo-level Group How does my research portray my target population?
Could my research positively or negatively impact various communities and the systems they are connected to?

How do community members perceive my research?

Have I met my duty to those who funded my research?

What are potential ripple effects for my target population by conducting this research?

Macro-level Society Does my research meet the societal expectations of social research?

What is the historical, political, social context of my research topic?

Have I met my social responsibilities as a researcher and as a social worker?

Does my research follow the ethical guidelines of my profession and discipline?

How does my research advance social, environmental or economic justice and/or human rights?

How does my research reinforce or challenge systems of power, control and structural oppression?

Key Takeaways

  • At the micro-level, researchers should consider their own conduct and the rights of individual research participants.
  • At the mezzo-level, researchers should consider the expectations of their profession, any organizations that may have funded their research, and the communities affected by their research.
  • At the macro-level, researchers should consider their duty to and the expectations of society with respect to social science research.

Exercises

  • Summarize the benefits and harms at the micro-, mezzo-, and macro-level of inquiry. At which level of inquiry is your research project?
  • In a few sentences, identify whether the benefits of your study outweigh the potential harms.

6.4 Being an ethical researcher

Learning Objectives

Learners will be able to…

  • Identify why researchers must provide a detailed description of methodology
  • Describe what it means to use science in an ethical way

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 treatment decisions can have greater 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 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 important information is missing. 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 knowledge in social work, or in any other science for that matter, takes place. There actually is a method to this madness we call research. At its best, research reflects a systematic, transparent, informative process.

Honesty in research is facilitated by the scientific . 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 many qualitative studies, as our purpose is often a deep understanding of very specific circumstances, rather than the broad, generalizable knowledge we traditionally seek in quantitative studies. Nevertheless, in the research process is 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. This allows the quality of our research to be evaluated. Along with replication, is another important principle of the scientific process. Peer review involves other knowledgeable researchers in our field of study to evaluate our research and to determine if it is of sufficient quality to share with the public. There are valid critiques of the peer review process: that it is biased towards studies with positive findings, that it may reinforce systemic barriers to oppressed groups accessing and leveraging knowledge, that it is far more subjective and/or unreliable than it claims to be. Despite these critiques, peer review remains a foundational concept for how scientific knowledge is generated.

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 your own work can help a researcher 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? This allows us to assess for potential that may compromise the integrity of the research.

The standard of replicability, the peer-review process, and openness about a study’s strengths, weaknesses, and funding sources enables 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. By “use” I mean 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. This helps us to more adequately critique the value of this research, to recognize its strengths and limitations.

As part of my research course, students are asked to critique a research article. I often find in this assignment that students often have very lofty expectations for everything that ‘should’ be included in the journal article they are reviewing. While I appreciate the high standards, I often give them feedback that it is perhaps unrealistic (even unattainable) for a research study to be perfectly designed and described for public consumption. All research has limitations; this may be a consequence of limited resources, issues related to feasibility, and unanticipated roadblocks or problems as we are carrying out our research. Furthermore, the ways we disseminate or share our research often has restrictions on what and how we can share our findings. This doesn’t mean that a study with limitations has no value – every study has limitations! However, as we are reviewing research, we should look for an open discussion about , strengths, and weaknesses of the study that helps us to interpret what took place and in what ways it may be important.

For instance, this can be especially important to think about in terms of a study’s sample. It can be challenging to recruit a diverse and for your study (however, that doesn’t mean we shouldn’t try!). The next time you are reading research studies that were used to help establish an evidence based practice (EBP), make sure to look at the description of the sample. We cannot assume that what works for one group of people will uniformly work with all groups of people with very different life experiences; however, historically much of our intervention repertoire has been both created by and evaluated on white men. If research studies don’t obtain a diverse sample, for whatever reason, we would expect that the authors would identify this as a limitation and an area requiring further study. We need to challenge our profession to provide practices, strategies, models, interventions, and policies that have been evaluated and tested for their efficacy with the diverse range of people that we work with as social workers.

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.

Key Takeaways

  • Conducting research ethically requires that researchers be ethical not only in their data collection procedures but also in reporting their methods and findings.
  • The ethical use of research requires an effort to understand research, an awareness of your own limitations in terms of knowledge and understanding, and the honest application of research findings.

Exercises

  • Think about your research hypothesis at this point. What would happen if your results revealed information that could harm the population you are studying? What are your ethical responsibilities as far as reporting about your research?
  • Ultimately, we cannot control how others will use the results of our research. What are the implications of this for how you report on your research?

 

Media Attributions


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Graduate research methods in social work by Matthew DeCarlo, Cory Cummings, Kate Agnelli is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License, except where otherwise noted.

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