Beyond individual rights and freedoms: metaethics in social work research.
A parallel shift has taken place in the professional literature raising questions about the state of research and knowledge building in social work and the role of empirically based practice (Bloom, 1993; Drisko, 1997; Fraser, 1994; Myers & Thyer, 1997; Reamer, 1998; Wodarski, Thyer, Iodice, & Pinkerston, 1991). These trends are important in a time of fiscal restraint when there is an increased demand for social workers to demonstrate the efficacy of their practice, to support sound decision making, and to justify the need for social programming. Research and scholarship are also important in enhancing the stature of social work as a profession through generating and transmitting knowledge for the preparation and continuing education of practitioners in our own discipline, and in entering into discourse about practice with colleagues in other disciplines.
Whereas an increased research focus is welcome, the pace of this change has meant that social work has had a relatively short history in which to develop guidelines for research when compared with other disciplines. Although social workers have much to learn from research ethics in other fields of study, the profession must also consider ethics in social work research in light of the profession's own mission and code of ethics. Social work research ethics must go beyond the consideration of individual rights and freedoms to embrace a more complex analysis that incorporates the long-standing ethos of social work to support the right to self-determination and the dignity of the individual and the need to promote social justice and equity in the community at large (Banks, 1995; Reamer, 1997; Wesley, 1996). A social work model of research ethics will consider how to balance highly valued ethical principles that are individually focused, such as self-determination and nonmalfeasance (the obligation to do no harm), with equally important values that have a collective focus, such as justice and beneficence (the obligation to bring about good). We suggest that such an overarching focus on both individual and collective interests calls for social workers to take a metaethics perspective in research pursuits.
In this article we outline accepted principles guiding research ethics--the potentially conflictual issues for social workers as they strive to address individual and collective interests in research endeavors--and make some preliminary recommendations for developing a social work perspective in research ethics. To date, little attention has been given in the social work literature to the relationship between research ethics and the larger mission of social work practice. We hope that this introductory analysis sparks further discussion and debate about the special demands on social workers who engage in research.
Overview of Ethics in Research
Since the Code of Nuremberg in 1947, which emerged from Nuremberg Military Tribunals following the defeat of Nazi Germany (National Institutes of Health [NIH], 1995), there has been a worldwide effort to establish and enforce ethical and legal limits to research, particularly biomedical research (Medical Research Council of Canada, Natural Sciences and Engineering Research of Canada, & Social Sciences and Humanities Research Council of Canada, 1998; National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1979). Emphasis has been rightly given to protecting individual participants from suffering in the name of research or knowledge building, particularly in light of historical atrocities in which individual rights and freedoms were flagrantly violated. Such examples include the Nazi experiments on concentration camp inmates (Lifton, 1986), the Tuskegee syphilis study in which African American men were allowed to die of the disease long after penicillin became available ( National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research), and experimental research in New York where live cancer cells were injected into chronically ill and senile patients to measure their ability to reject foreign cells--a goal entirely unrelated to their condition (Post, Ripich, & Whitehouse, 1994).
International attention to ethical issues for research involving human subjects has led to cooperative efforts to articulate principles and standards for ethical deliberations (Medical Research Council of Canada et al., 1998; National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1979; NIH, 1995).
Ethical Principles that Guide Research Practices
Although there are many parallels with practice ethics, the standards for research place even more stringent responsibilities on the researcher given the expectation that research will not immediately (nor indeed ever) benefit the individual who agrees to take part (Council for International Organizations of Medical Sciences [CIOMS], 1993; National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1979). The three primary ethical principles guiding research are (1) autonomy and self-determination, which include protection of people with impaired or diminished autonomy; (2) beneficence, the obligation to bring about good (a parallel principle, nonmalfeasance, the obligation to do no harm, is often highlighted); and (3) justice, the obligation to ensure fair distribution of burdens and benefits (Medical Research Council of Canada et al., 1998; National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research; NIH, 1995).
Autonomy and Self-Determination. Concern for the dignity and respect of individual participants is at the heart of research ethics. One important way that this principle is codified is through the doctrine of informed consent. The guidelines for informed consent in research are familiar to practitioners as they bear resemblance to standard treatment consent procedures. Practitioner--researchers of all disciplines, however, are cautioned to take additional care in ensuring that potential research participants do not confuse their previous therapeutic relationship with the current research effort, in which individual participants may not directly benefit (Medical Research Council of Canada et al., 1998; National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1979).
The important elements of informed consent in research are
* to ensure that the individual has the mental capacity to give consent and, if not, to follow appropriate protocols for consent from a substitute decision maker
* to disclose sufficient information about the study and its aims to permit a person to weigh the potential risks and benefits of participation to make a meaningful choice
* to provide sufficient time and privacy to allow the person to fully consider participation
* to provide any other safeguard to ensure that consent is given freely and without coercion
* to ensure that each person is aware of what will happen with information collected during the research process, the steps researchers take to safeguard confidentiality of this material, and the measures to ensure anonymity in any reports of the study
* to ensure that the individual is aware that he or she may refuse to participate or later withdraw consent without any penalty (Medical Research Council of Canada et al., 1998; National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1979; NIH, 1995).
Recent refinements in ethical standards for research highlight the need for the researcher to consider the cultural or religious background of the population under study by demonstrating sensitivity to cultural practices and making adequate accommodations for differences in language, interpretation, and the way consent is obtained. For instance, in some cultures oral consent is regarded as far more important than written consent (CIOMS, 1993; Medical Research Council of Canada et al., 1998). Al-Krenawi (1995) provided an example of the importance of this sensitivity. In his research with a Bedouin community he successfully argued that cultural practices dictated oral consent, and that in Bedouin culture it would be considered an insult to request that such agreement be confirmed in writing. It is further instructive that Al-Krenawi also successfully asserted that religious mores dictated that he not approach female participants directly. "Gaining the patient's consent was also complicated because of Bedouin cultural rules regarding gender. A strange man has no right to communicate with a female who is not his relative" (p. 150). His approach then involved first introducing himself and the research to the male relatives who accompanied potential participants to the clinic, or to the older females who were escorting these younger women in the absence of an available male family member. When he was given permission to speak to each woman, he would then seek her consent for participation and if she did not want to participate, her wishes were respected. However, there may have been women in this community who would have wanted to participate in this research, but whose relatives had refused his approach. Clearly, when viewed through the lens of Western ethics these consent methods are unethical and would alternatively direct that women should independently have the right to make such a decision. Al-Krenawi successfully argued, however, that Western ethics would inappropriately override a long-standing and respected set of cultural and religious beliefs upheld by the women and the men in this community.
Nonmalfeasance: Anticipation and Articulation of Risks. Of utmost importance in the design of a research project is the careful consideration of any conceivable risks that should be weighed against the expected outcomes to ensure that participants are not harmed nor face undue hardship. The question of what constitutes "acceptable risk" is necessarily subjective and must be weighed carefully with consideration of the value system of the population under study (CIOMS, 1993; Medical Research Council of Canada et al., 1998). This deliberation is expected to include not only physical risks, which may be considerable in clinical trials of drug or treatment regimes, but also potential symbolic or personal discomforts such as embarrassment, fear of loss of reputation (for example, research that addresses a socially stigmatized issue), or anxiety, which again must be evaluated through the lens of the religious, cultural, or other value structure of potential participants (Medical Research Council of Canada et al.). As indicated previously, this information must then be clearly outlined in the consenting process.
Finally, although less attention is given to the articulation of benefits of participation in research, it is important to consider whether the anticipated benefits might serve as some form of inducement to participation. Benefits for research involvement may take two forms. The first is direct benefit from the research itself. For example, benefiting from an experimental treatment program that is being investigated. In this instance, it must be considered whether the individual would have equal access to the proposed treatment should he or she prefer not to participate in the research. The second benefit may be compensation for participating, such as money, free babysitting, or transportation costs. Although there is recognition that participants' time, inconvenience, and expense should be compensated, the size of the compensation (in money or services) should not be so large as to induce enrollment from someone who would otherwise decline (Medical Research Council of Canada et al., 1998; National Commissio n for the Protection of Human Subjects of Biomedical and Behavioral Research, 1979; NIH, 1995).
Beneficence and Justice. The concept of beneficence demands that the research is likely to bring about a good and that the risks associated with the outcome are, on balance, greater than the potential risks to participants. Justice in research focuses on the fair distribution of burden and benefit (Weijer, Dickens, & Meslin, 1997). Thus, care must be taken that vulnerable groups are not exploited and, equally, that disadvantaged individuals also benefit from the research endeavor (Weijer et al.). von Schroeder (1997) lamented the loss of altruism in medical human subject research maintaining that altruism has been replaced by researcher self-interest, with research becoming a means to compete for finances and for fame. Although clearly this is an extreme position, it highlights the multiple demands placed on researchers in the current economic and academic climate, and the challenges in maintaining a position of beneficence. Indeed in biomedical research, concerns have been raised about potential conflict of interest in research because of attractive financial inducements that can be offered by industry, most notably incentives offered by pharmaceutical companies to enroll patients in drug trials (Campbell, Louis, & Blumenthal, 1998; Lemmens & Singer, 1998; Weijer et al.). Campbell and colleagues in their survey of "academic life scientists" reported that 43 percent of respondents had received a gift independent from the grant or contract to conduct research. Lemmens and Singer concluded from their review of the empirical literature that there was evidence to suggest such inducements influence either the recruitment process or the outcome of a research project.
To this end, an important step has been the development of ethics review boards that act as disinterested groups to safeguard the rights of potential research participants, with particular emphasis on safeguarding vulnerable or disadvantaged populations. Ethics review boards, or their equivalents, are vested with the authority to approve or reject any research project involving human subjects (CIOMS, 1993; Medical Research Council of Canada et al., 1998). The recommended review process is two-tiered with a scientific review addressing the research question, design, and methods of analysis, and an ethical review addressing ethical principles and guidelines for participant safety, privacy, confidentiality, and informed consent. This review process is designed to ensure that the researcher has not only taken appropriate steps to safeguard participants, but also developed a study that can be expected to make a meaningful contribution to knowledge building. This later guideline was a key element of the 1947 Code of Nuremberg (NIH, 1995), that reviews of research would adjudicate the relative scientific merits of a study (CIOMS).
Social Work Perspective
Codes of ethics outline the roles, responsibilities, and baseline ethical standards for practice. The Canadian Association of Social Workers (CASW) (1994) and the NASW (2000) Codes of Ethics outline the responsibilities of social workers in Canada and the United States. The NASW Code indicates that social workers should support research, knowledge building, and evaluation of their own practices, whereas the CASW Code offers very little about the role of social workers as researchers. Both organizations, however, in keeping with the work of our colleagues in other disciplines, dictate that social work researchers are required to follow extensive guidelines for informed consent (CASW; NASW). Social workers are further directed to protect the confidentiality of research data, to guard against any dual relationship with research participants (for example, a clinical and research relationship), and to ensure that there is no potential conflict of interest.
These guidelines parallel the general trends in research ethics to focus on protecting individual participants. In both NASW (2000) and CASW (1994) codes, statements on social workers' ethical responsibilities to the broader society are separated from the research endeavor and are outlined in a distinct section that focuses on advocacy, lobbying, and other forms of social action. In the following discussion, in addition to considering social work perspectives on autonomy and self-determination, we attempt to sharpen our focus on the justice mission of social work and how this important ethical stance might be better balanced with the key principles of research that predominantly focus on preservation of individual rights.
Gallagher, Creighton, and Gibbons (1995) authored one of the few social work articles in the literature that addressed exclusively ethical dimensions of research and more specifically the potential for specialized issues for social work. They have considered the implications of traditional ethics review processes for social work researchers and suggested that the guidelines developed for medical research may be less relevant in the social sciences, where the envisioned possible risks and discomforts to the individual are less dramatic or invasive. In applying their ethical questions to a specific research project of their own they argued, on the principle of nonmalfeasance, that they should not inform parents, whose names had previously been recorded with a child abuse registry, that the real nature of their research was the adjustment of children and families after a child welfare investigation. They maintained that to reveal the true nature of their research would cause the families undue suffering in brin ging back events from a painful past, particularly if not all family members were aware of the alleged abusive incident. Gallagher and his colleagues also called on beneficence and responsibility when conducting research in areas that have potential social benefits, of which child protection is important. Finally, they argued on methodological grounds that if they had been more up-front their refusal rate would have escalated, and the participating families would not fairly represent the original sample. Their study passed extensive ethical review, and research participants were told that this was a study of children "some of whom have experienced difficulties with their health in their early life and their names had been obtained from records kept by people who work with children" (Gallagher et al., p. 306).
Gallagher et al. (1995) clearly asserted that in this circumstance beneficence should override self-determination, a direct contrast to traditional approaches to ethical deliberations of research. They maintained that the value of their findings for child protection practices was worth the potential harm in conducting research that violated the long-standing social work tenet of self-determination. Should a social work approach to research ethics recommend that a principal of justice should supersede individual rights, as suggested in this example where the burden for a relatively small number of parents is worth the benefit for society as a whole by knowing how to more effectively help children who have been abused?
In an earlier article on practice ethics (Regehr & Antle, 1997), we cautioned social workers about using undemocratic means to reach important ends. This is an instance where such caution must be exercised. At the heart of social work is trust, either in the formation of a therapeutic relationship with clients or in community practice with vulnerable groups. Truth telling is a crucial component in forming a trusting relationship. Indeed, social workers have been concerned about ensuring that the desire to do well on behalf of clients (beneficence and paternalism) not overshadow the client's right to be self-determining (Abramson, 1985). In addition, Gillespie (1995) suggested that attention has only recently shifted to the social harms associated with deception in research. The potential trust the public might place in social workers as a professional group is harmed by permitting social work researchers to lie in the name of building knowledge, even if that knowledge could be of benefit to a vulnerable grou p-children, for example.
Social Work Research Ethics: Balancing Autonomy, Justice, and Beneficence
Autonomy and Self-Determination
Self-determination, or autonomy, is a central ethical principle in social work that has been vigorously upheld (Abramson, 1996; Reamer, 1997). Such an emphasis is consistent with research ethics. The recognition that client self-determination can be undermined by the influences of a therapist has resulted in the ethical injunction that social workers engaged in research must take care to not have dual relationships with clients and to declare any potential conflict of interest (CASW, 1994; NASW, 2000). Despite this injunction, however, the current priority given to establishing the efficacy of clinical programs through research is now demanding that clinicians include research in their scope of practice. The complex nature of the place of evidence-based practice in social work is reflected in the extensive debate in the professional literature in response to assertions by Myers and Thyer (1997) that the right to efficacious treatment should be included in NASW's Code of Ethics (Reamer, 1998; Witkin, 1998). Th ese debates notwithstanding, the expertise of clinicians presents many advantages in research, including ensuring that studies are relevant to direct clinical practice and are sensitive to the needs of the population under study. Nevertheless, the dual role of clinician and researcher, although advantageous, poses risks to the self-determination of clients who are potential study participants. A better appreciation of these risks will enhance the ability of the clinician-researcher to protect study participants from harm.
At the heart of the social work endeavor is the formation of a therapeutic alliance and, as we have argued elsewhere, social workers often are sought to provide assessments in difficult situations, such as court-mandated evaluations, because of their ability to join with an individual or family to develop a more authentic understanding of their situations and attitudes (Regehr & Anile, 1997). Forming a therapeutic alliance has the potential to undermine the process of informed consent (Regehr & Anile). In this context, the therapeutic relationship may limit the client's ability to consider carefully the risks and benefits of participation in research. Taken to its logical extreme, clients with a strong therapeutic alliance may fear that refusing to engage in research could cause the therapist to reject them or become angry with them. Such concerns may actually not be so extreme if the client being approached about research were a woman who had been living in an abusive relationship and had been helped to lea ve by a social worker, or a family member of a runaway youth whom a social worker helped to reunite. In these instances, clients may place maintaining a relationship with the social worker above their own needs and wants, putting the social worker in an unexpectedly powerful position. Weijer et al. (1997), in their excellent review article on research ethics, indicated that there is evidence to be concerned about both the level of understanding of participants regarding a research project and the potential influence of a "therapeutic misconception" (Appelbaum, Roth, Lidz, & Bensens, 1987), where participants erroneously believe that the research project has been designed to help them specifically. Similarly, social work clients may trust that the social worker is acting in their best interests and thus may not see that in this situation the social worker is acting in a research role. In the role of researcher, the social worker may often be focused on a larger good-for example, the benefit of all women who ha ve been abused-rather than an individual client.
In addition to taking steps to ensure that clients truly understand the study (see Silva & Sorrell, 1988, for a detailed discussion), a potential response to this threat to self-determination would be to draw on techniques developed in qualitative research. LaRossa, Bennett, and Gelles (1981) reported that respondents in qualitative interviews were less likely to provide more detailed responses than they had intended when the researcher warned them ahead of the interview of the tendency for participants to "over disclose" because they had become comfortable during the research interview. Similarly, social work clinician-researchers must take care to articulate to potential participants the risk that individuals may feel inclined or compelled to participate in research because of their relationships with their social workers, particularly when people feel they have really been helped or that alternative services are not available or too expensive.
In addition, given that social workers frequently provide services to vulnerable and disadvantaged groups, such as women who have been abused, people who are poor, individuals with chronic health conditions including mental illnesses, and children in need of protection, further safeguards might be prudent. In such instances, the clinician might arrange for someone not known to the client to obtain consent. Furthermore, although all researchers must ensure that potential participants have the right to ongoing service, independent of their participation in research, extra care may be required in ensuring that vulnerable populations feel certain that this is true. Once again, a detailed disclosure process might be helpful, such as: "Some patients feel concerned that saying no to participation in research will affect the services they can receive, even when the researcher provides assurances that services will not be affected. If you have any doubts at all, we encourage you to talk with [independent person in org anization] and she/he can be reached at the following number...
A further risk associated with the clinician--researcher role is access to confidential records. Recent court decisions in the United States and Canada regarding access to clinical records have significantly compromised the privacy of treatment (Regehr, Glancy, & Bryant, 1997). However, whereas treatment records may be accessed by various parties in criminal, civil, and family court proceedings, the courts have attempted to outline guidelines within which records must be revealed (Menendez v. Superior Court, 1991; R. v. O'Connor, 1995). Clinician-researchers must be aware that legislation and court rulings regarding clinical notes do not apply to research records. Not only may research data reflect information contained in the clinical record, it also may contain data that go beyond that which are contained in the clinical records, such as details of spousal abuse perpetrated by a research participant. Given that courts may more easily access research data than clinical records, researchers must make extra ef forts to ensure confidentiality by removing identifying data and disguising participant identity.
Justice and Beneficence
For social work researchers, ethical deliberation must also include attention to the important principles of justice and beneficence. Although these principles have received attention in discussions of research ethics, their application has been more individually focused, perhaps in response to historical atrocities, as we identified earlier (National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1979). Recent guidelines developed in Canada by the three major government-funding sources for research highlight that research benefits and burdens should be fairly distributed in society. For social workers, it is of utmost importance that vulnerable and disadvantaged populations are included in the research agenda, that these groups benefit from the research, and that the research ultimately leads to improved social conditions. The complexity of meeting the needs of vulnerable populations is highlighted by recent policy statements by the National Alliance for the Mentally I ll (NAMI), pointing out the challenge of ensuring informed consent in a population where competence frequently fluctuates with the condition, suggesting that where such fluctuation is known or is anticipated family members or caregivers be included in the consenting process (NAMI, 1999). Similarly, as children more frequently are included in the research agenda, the roles of the child and the parent become increasingly complex in the consenting process, as the independent rights of the child come to be recognized and protected. Social work's historic commitment to working with children and disenfranchised groups, combined with its dual focus, perfectly positions the profession to provide leadership in providing unique approaches to research ethics when multiple and complex factors are at play.
A second concern is anticipating the potential future use of research findings. For example, we know clinically that women who seek refuge in shelters from abusive relationships are likely to return to these relationships many times. Research on services outcomes for this population could possibly have a devastating impact if the conceptual framework for the research does not include an appreciation of the complex nature of the cycle of abuse. Rather, repeated use of shelters might be interpreted as an ineffective use of services with potential serious negative effect on services for abused women. Social work researchers, in balancing a justice mission with individual rights and freedoms, must give due consideration to how vulnerable or stigmatized groups are currently viewed or misunderstood and ensure that the research design does not risk further perpetuation of such misunderstandings.
In response to the questions raised earlier by Gallagher and colleagues (1995)--that full disclosure of the real nature of research would negatively affect the participation rate and undermine the potential positive (beneficent) effect of the research for a vulnerable population--we suggest that there may be an alternative where both self-determination and beneficence can be addressed. If researchers clearly outline to participants in the information sharing and consenting process reasons why individuals might want to take part in this research, in terms of contribution to society and the ability to help others in like circumstances in the future, both the justice and self-determination missions can be met. Indeed, NAMI reports that from its own research about participation in studies, people with mental illness most frequently cite the ability to help others as their primary motivation for participation. Although altruism may be under question in professional and research practices (von Schroeder, 1997), we maintain that such assumptions should not extend to clients or the public at large. Even parents who were suspected of being abusive in the past might well appreciate why such research is important and may indeed want to contribute to a better understanding of their own or their children's past experiences.
Last, another approach in advancing justice and beneficence in research, one shared by other disciplines, is using research methodologies that empower participants, recognize participants as experts in their own lives, and incorporate action in the research endeavor. Although it is beyond the scope of this article to illuminate these approaches, it is important to highlight the more recent directions in advocacy research, participatory research, and feminist research models. Combining the justice principle of representing the interests of oppressed people with research methodology, these models seek to legitimize the experiences of those who have historically gone unheard or whose experiences have been misunderstood or misrepresented. Such research is described as a means of putting research capabilities in the hands of deprived and disenfranchised people so they can transform their lives for themselves (Park, Brydon-Miller, Hall, & Jackson, 1993; Wise, 1987; Woodman, Tully, & Barranti, 1995). Massat and Lund y (1997) offered an impressive consideration of the researcher's role in empowering study participants through the application of social work ethics and values and feminist principles.
Developing a Social Work Perspective on Research Ethics
The dual focus of social work ethical obligations--ensuring individual rights and freedoms and advocating for social justice and social change--requires consideration of ethical questions for research that transcends questions raised in traditional ethics committees. Social workers must adhere to all the ethical obligations defined by human subject research ethics review boards, and thus we recommend rather than advocating for less stringent guidelines for social work research ethics that the value of the dual perspective be more completely explored. Our preliminary recommendations are that social work researchers, in addition to traditional research guidelines, consider the following questions that surpass individual rights and freedoms to incorporate justice and beneficence:
* Is this research consistent with social work principles of working toward improving the situation of vulnerable individuals or groups in society?
* Will this research benefit the group being studied?
* What are the broader risks associated with this research? Could a vulnerable group be disadvantaged by potential research findings?
* Are subtle risks to self-determination and informed consent adequately addressed in this research?
* Does this research involve clients? Has the influence of a therapeutic alliance been sufficiently addressed in the consent process?
* Are there sufficient safeguards of ensuring the anonymity of research data, so that if the research records are subpoenaed they will not violate participant confidentiality?
* Are there research methods that might both rigorously answer the questions posed and serve to empower the individuals or population under study?
Social work researchers have an opportunity to make an important contribution in knowledge building through a metaethics perspective. Whereas the road for social work researchers is not straightforward, the questions raised here are consistent with the historical demands social workers face in maintaining rigorous self-awareness, sensitivity to the needs of individuals, and appreciation of the broader societal forces that affect vulnerable populations.
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|Author:||Antle, Beverley J.; Regehr, Cheryl|
|Date:||Jan 1, 2003|
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