2.4: Ethical Considerations in Sexuality Research
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As discussed in the previous chapter, research done by the Father of Modern Gynecology, Dr. Marion Simms was tainted by his unethical approach to patient care, based on perceived racism and beliefs about the pain threshold of Black enslaved women. As research became something that aided in the pursuit of knowledge, many researchers who were laser focused on wanting to know chose to overlook ethical considerations, and their actions led to great harm in numerous cases. Ethics are taken very seriously in institutions of higher learning because of this shameful past, and we as present day practitioners are held to high standards when it comes to research on human subjects.
At a broader societal level, members of some groups have historically faced more than their fair share of the risks of scientific research, including people who are institutionalized, are disabled, or belong to a racial or ethnic minority or otherwise disadvantaged group. A particularly tragic example of this is the Tuskegee (Box 2.3 above) and Guatemala Syphilis studies both led by Dr. John Cutler. In Tuskegee, the study conducted for the Public Health Service took place from 1932 to 1972. These participants were poor African American men in the vicinity of Tuskegee, Alabama, who were told that they were being treated for bad blood. Although they were given free medical care, they were not treated for their syphilis. Instead, they were observed to see how the disease developed in untreated patients. Even after the use of penicillin became the standard treatment for syphilis in the 1940s, these men continued to be denied treatment without being given an opportunity to leave the study. The study was eventually discontinued only after details were made known to the general public by journalists and activists. It is now widely recognized that researchers need to consider issues of justice and fairness at the societal level.
Beginning in 1946, the United States government, under Dr. Cutler, immorally and unethically engaged in research experiments, in which more than 5000 uninformed and unconsenting Guatemalan people were intentionally infected with bacteria that cause sexually transmitted diseases. Many remain untreated to this day (Rodriguez, & García, 2013).
In 1997, 65 years after the Tuskegee Syphilis Study began, and 25 years after it ended, President Bill Clinton formally apologized on behalf of the government to those who were affected. The United States eventually provided treatment and compensation for victims, families, and heirs in Tuskegee, including funding to locate the victims and pay attorneys’ fees. The ethical principle of equal justice strongly suggests that similar relief should be provided for the Guatemalan victims. While the U.S. now acknowledges this was an ethical failing, efforts to remediate the damage as in the case of Tuskegee, have not been undertaken, In a 2013 article entitled, First, do no harm: the US sexually transmitted disease experiments in Guatemala, The authors write, “Although US President Barack Obama apologized in 2010, and although the US Presidential Commission for the Study of Bioethical Issues found the Guatemalan experiments morally wrong, little if anything has been done to compensate the victims and their families.” (Rodriguez, & García, 2013).
Researchers have an obligation to practice their research in an ethical manner, but what does that mean exactly? They must respect their participants' dignity and their autonomy, giving them the opportunity to act without coercion. Researchers must obtain informed consent, which essentially involves the participants' agreement and documentation of their agreement to participate in a study after having been informed of everything that might reasonably be expected of them as participants. Included in this is also a right to privacy so that those being studied have their identity kept confidential as well as the right to opt out. None of this was done in Guatemala nor in Tuskegee, and had they been informed, they most likely would not have agreed to participate in the first place.
Because of these and other heinous examples of ethical violations, measures have been put in place to offset this type of exploitation. One of the earliest ethics codes was the Nuremberg Code, a set of 10 principles written in 1947, in conjunction with the trials of Nazi physicians accused of shockingly cruel research on concentration camp prisoners during World War II. It provided a standard against which to compare the behavior of the men on trial, many of whom were eventually convicted and either imprisoned or sentenced to death. The Nuremberg Code was particularly clear about the importance of carefully weighing risks against benefits and the need for informed consent. The Declaration of Helsinki is a similar ethics code that was created by the World Medical Council in 1964. Among the standards that it added to the Nuremberg Code was that research with human participants should be based on a written protocol, and it must include a detailed description of the research that is reviewed by an independent committee. The Declaration of Helsinki has been revised several times, most recently in 2004. In the U.S., concerns about the Tuskegee experiment and others led to the publication of federal guidelines known as the Belmont Report. The Belmont Report explicitly recognized the principle of seeking justice, including the importance of conducting research in a way that distributes risks and benefits fairly across different groups at the societal level. The Belmont Report became the basis of a set of laws the Federal Policy for the Protection of Human Subjects that apply to research conducted, supported, or regulated by the federal government. An extremely important part of these regulations is that universities, hospitals, and other institutions that receive support from the federal government must establish an Institutional Review Board (IRB), a committee that is responsible for reviewing research protocols for potential ethical problems. An IRB must consist of at least five people with varying backgrounds, including members of different professions, scientists and nonscientists, men and women, and at least one person not otherwise affiliated with the institution. The IRB helps to make sure that the risks of the proposed research are minimized, the benefits outweigh the risks, the research is carried out in a fair manner, and the informed consent procedure is adequate. The federal regulations also distinguish research that poses three levels of risk. Exempt research includes research on the effectiveness of normal educational activities, the use of standard psychological measures and surveys of a nonsensitive nature that are administered in a way that maintains confidentiality, and research using existing data from public sources. It is called exempt because the regulations do not apply to it. Minimal risk research exposes participants to risks that are no greater than those encountered by healthy people in daily life or during routine physical or psychological examinations. Minimal risk research can receive an expedited review by one member of the IRB, or by a separate committee under the authority of the IRB that can only approve minimal risk research. (Many departments of psychology have such separate committees.) Finally, at-risk research poses greater than minimal risk and must be reviewed by the entire IRB.
Specific to human sexuality research, The American Psychological Association (APA) is the governing body for much of the sex research undertaken. Ethical Principles of Psychologists and Code of Conduct (also known as the APA Ethics Code) was first published in 1953 and has been revised several times since then, most recently in 2002. It includes about 150 specific ethical standards that psychologists and their students are expected to follow. Much of the APA Ethics Code concerns the clinical practice of psychology advertising purposes, the most relevant part, is linked here: American Psychological Association Ethics Code.
Just as the medical field grew in the West out of predominately white, heteronormative, cisgender persons, so did the study of sexuality. Much of the body of research in the field is done on white, heterosexual cisgender people. Despite the world of human sexuality, being as vast and diverse as it is, research is slow to catch up. New spaces and opportunities for different research are opening up as the field of educators become more diverse but as we will learn throughout this book, there is much still to be done. One space that facilitates engaging with sexuality beyond those borders is afrosexology.com. Their mission to educate, explore and help people reclaim their sexual agency which then give them agency in their larger lives is one way in which current sex research is moving the needle towards equity.
Putting Ethics Into Practice
In this section, we look at some practical advice for conducting ethical research. Who knows, some of you may be undertaking sex research one day! Again, it is important to remember that ethical issues arise well before you begin to collect data and continue to arise through publication and beyond.
As the APA Ethics code notes in its introduction, “Lack of awareness or misunderstanding of an ethical standard is not itself a defense to a charge of unethical ethical responsibilities” (Ethical Principles of Psychologists and Code of Conduct, 2017). At a minimum, this means reading and understanding the relevant standards of the APA Ethics Code, distinguishing minimal risk from at-risk research, and knowing the specific policies and procedures of your institution including how to prepare and submit a research protocol for institutional review board (IRB) review. If you are conducting research as a course requirement, there may be specific course standards, policies, and procedures. If any standard, policy, or procedure is unclear, or you are unsure what to do about an ethical issue that arises, you must seek clarification. You can do this by reviewing the relevant ethics codes, reading about how similar issues have been resolved by others, or consulting with more experienced researchers, your IRB, or your course instructor. Ultimately, you as the researcher must take responsibility for the ethics of the research you conduct.
As you design your study, you must identify and minimize risks to participants via the informed consent procedure, which in parts states:
A researcher must inform participants about (1) the purpose of the research, expected duration, and procedures; (2) their right to decline to participate and to withdraw from the research once participation has begun; (3) the foreseeable consequences of declining or withdrawing; (4) reasonably foreseeable factors that may be expected to influence their willingness to participate such as potential risks, discomfort, or adverse effects; (5) any prospective research benefits; (6) limits of confidentiality; (7) incentives for participation; and (8) whom to contact for questions about the research and research participants' rights. They provide opportunity for the prospective participants to ask questions and receive answers. (Ethical Principles of Psychologists and Code of Conduct, 2017).
Start by listing all the risks, including risks of physical and psychological harm and violations of confidentiality. Remember that some risks might apply only to some participants. For example, while many people would have no problem completing a survey about their fear of various sex crimes, this may be triggering for those who have been a victim of one of those crimes. This is why you should seek input from a variety of people, including your research collaborators, more experienced researchers, and even from nonresearchers who might be better able to take the perspective of a participant.
Once you have identified the risks, you can often reduce or eliminate many of them. One way is to modify the research design. For example, you might be able to shorten or simplify the procedure to prevent boredom and frustration. You might be able to replace upsetting or offensive stimulus materials (e.g., graphic photos) with less upsetting or offensive ones (e.g., milder photos of the sort people are likely to see in the newspaper).
A second way to minimize risks is to use a pre-screening procedure to identify and eliminate participants who are at high risk. You can do this in part through the informed consent process. For example, you can warn participants that a survey includes questions about their fear of sex crimes, and remind them that they are free to withdraw if they think this might upset them. Prescreening can also involve collecting data to identify and eliminate participants.
A third way to minimize risks is to take active steps to maintain confidentiality. You should keep signed consent forms separate from any data that you collect, and in such a way that no individual's name can be linked to their data. You should only collect information that you actually need to answer your research question. If a person’s sexual orientation or ethnicity is not clearly relevant to your research question, for example, then do not ask them about it. Be aware also that certain data collection procedures can lead to unintentional violations of confidentiality. When participants respond to an oral survey in a shopping mall or complete a questionnaire in a classroom setting, it is possible that their responses will be overheard or seen by others. If the responses are personal, it is better to administer the survey or questionnaire individually in private or to use other techniques to prevent the unintentional sharing of personal information.
Be sure to identify and minimize deception. The APA code of ethics standard 8.07 states that a researcher may:
(a) not conduct a study involving deception unless they have determined that the use of deceptive techniques is justified by the study's significant prospective scientific, educational, or applied value and that effective non deceptive alternative procedures are not feasible.
(b) not deceive prospective participants about research that is reasonably expected to cause physical pain or severe emotional distress.
(c) must explain any deception that is an integral feature of the design and conduct of an experiment to participants as early as is feasible, preferably at the conclusion of their participation, but no later than at the conclusion of the data collection, and permit participants to withdraw their data. (Ethical Principles of Psychologists and Code of Conduct, 2017).
Remember that deception can take a variety of forms, not all of which involve actively misleading participants. It is also deceptive to allow participants to make incorrect assumptions or simply withhold information about the full design or purpose of the study. It is best to identify and minimize all forms of deception.
Remember that according to the APA Ethics Code, deception is ethically acceptable only if there is no way to answer your research question without it. Therefore, if your research design includes any form of active deception, you should consider whether it is truly necessary.
In general, it is considered acceptable to wait until debriefing before you reveal your research question as long as you describe the procedure, risk and benefits during the informed consent process.
Once the risks of the research have been identified and minimized, you need to weigh them against the benefits. This requires identifying all the benefits. Remember to consider benefits to the research participants, to science, and to society. If you are a student researcher, remember that one of the benefits is the knowledge you will gain about how to conduct scientific research, knowledge you can then use to complete your studies and succeed in graduate school or in your career.
If the research poses minimal risk, no more than in people’s daily lives or in routine physical or psychological examinations, then even a small benefit to participants, science, or society is generally considered enough to justify it. If it poses more than minimal risk, then there should be more benefits. If the research has the potential to upset some participants, for example, then it becomes more important that the study be well designed and answer a scientifically interesting research question or have clear practical implications. It would be unethical to subject people to pain, fear, or embarrassment for minimal scientific gain. Research that has the potential to cause harm that is more than minor, or lasts for more than a short time, is rarely considered justified by its benefits.
Once you have settled on a research design, you need to create your informed consent and debriefing procedures. Start by deciding whether informed consent is necessary according to APA Standard 8.05. If informed consent is necessary, there are several things you should do. First, when you recruit participants whether it is through word of mouth, posted advertisements, or a participant pool, provide them with as much information about the study as you can. This will allow those who might find the study objectionable to avoid it. Second, prepare a script or talking points to help you explain the study to your participants in simple everyday language. This should include a description of the procedure, the risks and benefits, and their right to withdraw at any time. Third, create an informed consent form that covers all the points in APA Standard 8.02a that participants can read and sign after you have described the study to them. Your university, department, or course instructor may have a sample consent form that you can adapt for your own study. If not, an Internet Search will turn up several samples. Remember that if appropriate, both the oral and written parts of the informed consent process should include the fact that you are keeping some information about the design or purpose of the study from them but that you will reveal it during debriefing.
Debriefing is similar to informed consent in that you cannot necessarily expect participants to read and understand written debriefing forms. So again, it is best to write a script or set of talking points, with the goal of being able to explain the study in simple everyday language. During debriefing, you should reveal the research question and full design of the study. For example, if participants are tested under only one condition, then you should explain what happened in the other conditions. If you deceived your participants, you should reveal this as soon as possible, apologize for the deception, explain why it was necessary, and correct any misconceptions that participants might have as a result. Debriefing is also a good time to provide additional benefits to research participants, by giving them relevant practical information or referrals to other sources of help. For example, in a study of attitudes toward domestic abuse, you could provide pamphlets about domestic abuse and referral information to the university counseling center for those who might want it.
Remember to schedule plenty of time for the informed consent and debriefing processes. They cannot be effective if you have to rush through them. The next step is to get institutional approval for your research, based on the specific policies and procedures at your institution or for your course. This will generally require writing a protocol that describes the purpose of the study, the research design and procedure, the risks and benefits, the steps taken to minimize risks, and the informed consent and debriefing procedures. Do not think of the institutional approval process as merely an obstacle to overcome but as an opportunity to think through the ethics of your research and to consult with others who are likely to have more experience or different perspectives than you. If the IRB has questions or concerns about your research, address them promptly and in good faith. This might even mean making further modifications to your research design and procedure before resubmitting your protocol.
Your concern with ethics should not end when your study receives institutional approval. It now becomes important to stick to the protocol you submitted, or to seek additional approval for anything other than a minor change. During the research, you should monitor your participants for unanticipated reactions, and seek feedback from them during debriefing. Be alert also for potential violations of confidentiality. Keep the consent forms and the data safe and separate from each other and make sure that no one, intentionally or unintentionally, has access to participants personal information.
Finally, you must maintain your integrity through the publication process and beyond. Address publication credit; who will be authors on the research and the order of authors with your collaborators early and avoid plagiarism in your writing. Remember that our scientific goal is to learn about the way the world actually is and that your scientific duty is to report on your results honestly and accurately. So do not be tempted to fabricate data or alter your results in any way. Besides, unexpected results are often as interesting or more so than expected ones.
While these standards of ethics put forth by the APA are seen as a definitive guide in the pursuit of ethical research, even the organization itself, the APA has failed to abide by them in large scale research that has been widely published, cited and used as justification for policy and funding decisions nationwide. Many historically relevant psychological studies are clear violations of the current standards set by the American Psychological Association (APA) and were founded on the basis of systemic racism. Experiments like the aforementioned Tuskegee Syphilis Study, Jane Elliot’s Blue/Brown Eyes Exercise examined in the film, A Class Divided (full film) | FRONTLINE, and The Doll Test Landmark Cases: Brown v Board Doll Test (C-SPAN) hold a variety of unethical practices in the way they were produced, but are still considered to be groundbreaking contributions to the current psychological landscape.
Additionally, many early thinkers including Ronald Fisher, a key player in the development of statistical science, also supported racism and eugenics. There is a laundry list of connections between systemic racism and psychology, which is why the APA’s decision to apologize for its role in incorporating racism within the discipline of psychology is critical to the development of psychological practices to come, but not the only solution.
The APA cannot completely correct the wrongs of the racist practices put forth in the past, however, the Association has a responsibility to put forth more ethical practices that do not further marginalize and misdiagnose people of color. To this day, there is an overrepresentation of Black Americans who are admitted into psychiatric hospitals, suicide rates for Black Youth continue to rise, and Black Americans are more likely to be diagnosed with disorders like schizophrenia as compared to White Americans.
As American culture strives to become more centered around the emotional wellness of all people and seeks to condemn dehumanization, institutions must develop better practices for building spaces of healing.