Ethics in Human Services Primary Research: Issues and Guidelines

Ethical Issues in Human Services Research

Ethics matters in academic and scientific research. The issue of ethics is no less — and no more — important in research than it is in any other practice that has the potential of causing harm or creating good for others. Ethical behavior requires more than simply following the rules. Humans who participate in research should be treated with respect and should not be subjected to unnecessary risk. Participants should know what their involvement will entail, should give voluntary and non-coerced consent, and should have the opportunity to withdraw if they wish to stop. These requirements embody the ethical concept of respect.

There are numerous ethical issues relevant to human services research: client rights, confidentiality and privacy, informed consent, service delivery, boundary issues and conflicts of interest, documentation, defamation of character, client records, supervision, staff development and training, consultation, client referral, fraud, termination of services and client abandonment, practitioner impairment, and evaluation and research. Two issues warrant particular attention: standard of care and the protection of research participants from harm.

Standard of care is defined as what an ordinary, reasonable, and prudent professional with the same or similar training would have done under the same or similar circumstances (Reamer, 2012). The issue of professional negligence arises directly from this standard. Researchers have a duty of care, and dereliction or breach of that duty can cause damage or injury. Researchers must guard against misfeasance (the improper performance of an act that might have been performed lawfully), malfeasance (the commission of a wrongful or unlawful act), and nonfeasance (the failure to perform an act that is one's responsibility) (Reamer, 2012).

There are three broad areas of risk in social research, each particularly salient when researching topics involving juveniles. First, participants may be harmed as a result of their involvement — potential harms include death or injury, stress, guilt, reduction in self-respect or self-esteem, unfair treatment, withheld benefits, and minor discomfort. Second, professional relationships and the knowledge base may be damaged through falsification of data, plagiarism, abuse of confidentiality, or deliberate violation of regulations. Third, problems for the community or society may result from the effect of cultural values and beliefs on the knowledge produced and the impact of that knowledge on society (Gillespie, 2012).

Different cultures hold different standards regarding the appropriate gender roles of men and women. According to the National Association of Social Workers (NASW) Code of Ethics, Section 1.05(c): "Social workers should obtain education about and seek to understand the nature of social diversity and oppression with respect to race, ethnicity, national origin, color, sex, sexual orientation, gender identity or expression, age, marital status, political belief, religion, immigration status, and mental or physical disability." This standard may place a social worker in a difficult position when he or she perceives that a client is in an exploitative relationship — for example, a wife who is likely being physically abused by her husband or partner. The social worker must ask: Am I mistranslating the norms of this culture through my own lens, or is this a situation that requires intervention to help a woman who would otherwise have no advocate? In some instances, the answer may be both. While cultural norms vary, social workers cannot be pure cultural relativists. They must be sensitive to the needs of all parties while still upholding certain moral standards.

Cultural Sensitivity and the Protection of Vulnerable Populations

Women from all cultures who are in abusive situations often have an ambivalent relationship with their abusive husband or partner and may be unwilling to speak about their abuse to a third party. Even when they do, they may quickly retract their statements. Immigrants who come from cultures where patriarchal standards are the norm and who have had negative experiences with authorities in their home countries may be even more reluctant to come forward. While social workers must be cognizant of these factors, culture cannot be used as an excuse for abuse.

Language barriers frequently present additional obstacles for abused women, who may feel particularly vulnerable and fear that coming forward will leave them without economic opportunities if they separate from their partners. The most extreme example involves women held in conditions of enslavement. It is estimated that 28 percent of trafficked women saw a healthcare professional while they were still in captivity; despite contact with someone who could potentially assist them, these women were afraid to come forward. Women may also have difficulty communicating their distress explicitly, requiring observers to read nonverbal signs. Survivors often present with symptoms of PTSD, anxiety, chronic pain (including sexually-related pain such as STDs and pelvic pain), or receive inadequate medical care because their partners attempt to keep them out of the healthcare system (Dovydaitis, 2011). Women brought into the country illegally and without health insurance are further limited in their ability to be identified by a healthcare or social worker, making it all the more critical that opportunities for intervention are seized when they arise.

Another ethical standard from the NASW Code of Ethics, Section 6.04(d), reads: "Social workers should act to prevent and eliminate domination of, exploitation of, and discrimination against any person, group, or class on the basis of race, ethnicity, national origin, color, sex, sexual orientation, gender identity or expression, age, marital status, political belief, religion, immigration status, or mental or physical disability." Standing up to prevent the exploitation of women — including exploitation at the hands of intimate partners — is thus a fundamental obligation. Cultural differences must be acknowledged, but they should serve to inform the social worker's understanding of the full context of a relationship, not to excuse physically, mentally, or emotionally abusive behavior or, in extreme cases, enslavement.

Response to colleague: It would seem that a potential problem exists in attaining and proving informed consent while simultaneously maintaining confidentiality or research anonymity. Waivers must demonstrate that the particular participant agreed to participate, and the researcher must be able to trace the waiver to that participant. Therefore, no research program can be completely anonymous; at some point the researcher must obtain consent and must be able to prove it. However, this represents a vast improvement over earlier research protocols in which participants may not even have realized they were part of a study — as occurred in the Tuskegee syphilis study.

Human service professionals are expected to negotiate with clients the purpose, goals, and nature of the helping relationship prior to its onset, and to inform clients of the limitations of the proposed relationship (National Organization for Human Services, 1996). In the context of primary research, this obligation can be addressed by obtaining and documenting informed consent forms from participants — or from parents and guardians when participants are minors — that clearly explain the purpose, risks, and voluntary nature of the study. This process should include full disclosure provided both in conversation and in writing.

Minimizing risks to participants is a corresponding IRB requirement. Researchers must ensure that participants understand any risks associated with the study as well as the potential benefits. Practical safeguards include ensuring that notes do not contain identifying information, keeping data protected from unauthorized access, conducting audits to ensure compliance, and having crisis management plans and referral sources available for participants who may need them.

Confidentiality is a major ethical issue in conducting primary research in human services. Clients who receive services deserve and expect to have their personal information protected. According to the American Counseling Association (ACA, 2005) Code of Ethics, Section G.2.e, information obtained about research participants during the course of an investigation is confidential. This can be addressed by explaining, as part of the informed consent process, exactly how personal information will be included in the research anonymously.

A second ethical issue is commitment to clients. The NASW Code of Ethics requires practitioners to promote the well-being of clients, to prioritize clients' interests, and to maintain confidentiality — while also mandating the reporting of child abuse or credible threats of harm to self or others. Explaining these limits of confidentiality during intake is both an ethical and a legal requirement. As part of the intake process, practitioners should make these boundaries explicit to all clients before services begin.

Informed Consent, Confidentiality, and Standard of Care

The Institutional Review Board (IRB) has final approval over any research project proposed by its members. If the IRB determines during its review that any aspect of the data collection process is unethical, it can deny approval for the project entirely.

For researchers focused on juvenile populations, the Academy of Criminal Justice Sciences offers relevant professional guidance. A general principle of the Academy is a commitment to enhancing the general well-being of society through respect for the rights, dignity, and worth of all people. Specific guidelines applicable to research involving juveniles include refraining from the disclosure of personal information, not misrepresenting findings or omitting data, and not making commitments unless there is full intention and ability to honor them (Academy of Criminal Justice Sciences, 2000).

Response to colleague (confidentiality): It is especially important to explain the limits of confidentiality when dealing with clients who have been referred by outside agencies, particularly courts. Court referral suggests a heightened vulnerability to the legal process, and clients need to be aware of the possible consequences of full disclosure. However, from a research standpoint, these types of disclosures may affect the validity of information uncovered during the research process by inhibiting full self-disclosure.

Response to colleague (juveniles): Because the research focus involves juveniles, an actual ethical conflict may arise. In many cases, an appropriate intervention for an at-risk teenager might produce change that is not necessarily welcome within the family or community. If a positive change for the juvenile creates tension at home — for example, if an intervention aimed at reducing substance abuse leads to a decline in the juvenile's compliance with parents who are themselves active users — the ethical implications for the family system become significant. Would such a research paradigm be considered ethical?

The findings and strategies used in primary research to develop an effective human services program are a legitimate concern for researchers. Primary research strategies may not work equally well for every type of organization (Suri, 2011). Findings from one organization's primary research may be motivating, but strategies developed from another organization's primary research may not be the best fit.

For example, the Department of Veterans Affairs' direct findings led it to conclude that housing and medical services were the most effective way to address homelessness among veterans (Department of Veterans Affairs, 2011), while the American Red Cross determined that poverty and a lack of disaster preparedness were primary drivers of homelessness (American Red Cross, 2011). If both organizations relied on each other's findings, neither might produce adequate results for the populations they serve. What works for one organization based on its primary research may not be appropriate for another.

A second concern involves data accuracy. Primary research is conducted by the original investigator; secondary research relies on the information presented in that primary work. The results of primary research might be assumed to be unaltered, yet miscalculations or improperly collected data can occur (Suri, 2011). Human services organizations often rely on data to assess community need and determine how many people may be affected by a given issue. Inaccurate information can result in insufficient resources being allocated to address the problem.

Section G of the American Counseling Association Code of Ethics prepares the human services field for appropriate and preferred research methods. Code G.1.a states that the field should use human subjects who are actually affected by the type of human service need being studied (American Counseling Association, 2005). This helps prevent primary research from being conducted on individuals who are not representative of the population in question. If the research addresses homelessness, for instance, participants should be individuals experiencing or at risk of homelessness — unless the study is specifically designed to examine the pathway into homelessness from a stable-housing baseline.

Code G.2.h states that it is imperative to provide clear explanations of the steps used, where data was held, and a thorough explanation of findings (American Counseling Association, 2005). Clarifying the data ensures that human services organizations use only relevant information and can determine whether findings are applicable to their own contexts.

Conclusion

Even when clear ethical standards and principles exist, there will be times when the need to conduct accurate research conflicts with the rights of potential participants. No set of standards can possibly anticipate every ethical circumstance that may arise. Furthermore, there needs to be a procedure that ensures researchers consider all relevant ethical issues when formulating research plans.