2. LITERATURE REVIEW
2.6 Situating Relational Autonomy in Research Ethics in HIV Vaccine Trials in Developing
2.6 Situating Relational Autonomy in Research Ethics in HIV Vaccine Trials in Developing
In acknowledging the existence and impact of relationships and contexts on individuals, the alternative, richer models of autonomy presented by feminists also turn the spotlight onto the inequalities that exist within these relational contexts for many of the participants from developing countries. Extending this relational model of ethics to the research process, Fisher (2000) argues that ensuring that research will be both valid and socially valuable, and
formulating fair and ethical procedures, cannot simply be achieved through the scientist‟s moral reflections and ethical deliberations. She argues that a truly relational ethic can only be derived through scientist-participant dialogue, based on respect and mutual cooperation. This focus on mutual respect is also emphasized in other recent works on research ethics (Emanuel, Wendler, Killen & Grady, 2004; Lysaught, 2004). In addition, feminist models of relational autonomy in ethics also allow scientists and researchers to “integrate their rational and relational caring selves in ways that enhance their ability to engage research participants as partners in creating
experimental procedures reflecting both scientific and interpersonal integrity” (Grossman et al., 1997 in Fisher, 2000, p. 137). Fisher thus builds on the conceptual foundations of feminist ethics to develop a more a relational ethic for science and research that incorporates and enhances the interpersonal nature of and obligations inherent in the scientist-participant relationship. Such a process could arguably have improved the understanding of the research process in some complex microbicide HIV prevention studies, which reported that less than 30% of the women enrolled in the South African arm of the trial understood essential components of trial
participation (Ramjee et al., 2000). Ironically, the scientific aim of the study was to empower women‟s agency in the fight to reduce sex workers‟ vulnerability to HIV.
In acknowledging the existence and impact of relationships and contexts on individuals, the alternative, richer model of autonomy presented by feminists discussed above turns the spotlight onto the inequalities that exist within these relational contexts for many of the participants from developing countries. A relational interpretation of autonomy is conscious of both interpersonal and political relationships of power and powerlessness, acknowledging that autonomy is not simply about being offered a choice or consenting to some predetermined research project, but about having the opportunity to resist oppression and to adequately shape the world (Sherwin, 1998a). While autonomy ultimately resides in the individual, under relational autonomy, society, and not just the individual, is the subject of examination, so that responsibility for autonomy extends, but it not limited to, the social. Sherwin (1998a) emphasizes that, when relational interpretations of autonomy are applied in research contexts, informed consent is understood as an ongoing, interactive process in which both parties can be transformed.
A relational view helps us to understand how the specific social location of (patients) can affect their autonomy status. It explains why requiring health care providers to disclose relevant information and seek the permission of (patients) is a necessary, but not a sufficient, criterion for protecting (patient) autonomy (Sherwin, 1998a, p. 42).
Feminist theory moves traditional ethical approaches out of their neutral standpoint, turning the spotlight on relationships and contexts in which people – men and women - are embedded. Not only do the above arguments address the current lack of attention to the relationships in which research participants are embedded, and their impact on individual autonomy, but they also allow for the acknowledgment in ethical theory and practice of the relationship between researchers and research participants. Central to these relational theories is the idea that informed consent is a collaborative project in which researcher and research participant are moral agents who work
together to ensure that research is socially valuable and valid while being conscious that
participant perspectives should inform but not replace ethical deliberation by researchers (Fisher, 2000). Key themes in this approach are those aspects of the researcher-participant relationship which enhance ethical research – trust, mutual understanding, and collaborative decision making which is cognizant of each individual‟s value orientations. While it may not be possible to completely eliminate power differences from the research relationship, Fisher (2000) argues that the relationship between researcher and participant can be rendered complementary and non- exploitative. Feminist relational ethics challenge traditionally universalistic and principled ethical positions to acknowledge the importance of intersubjectivity, particularity and context;
they aim to equip researchers with ethical tools that reflect the interpersonal nature and obligations inherent in the researcher-participant relationship (Fisher, 2000).
Research in the social sciences traditionally reflects the values and concerns of dominant social groups and, as such, has neglected issues of concern to women and other minority groups
(Cameron, 2001; Kass, 1998; Macklin, 1993; Sherwin, 1996; Sinha, 2003; Wolf, 1996). Feminist bioethicists, on the other hand, argue that research is both personal and political and challenge social scientists to reconceptualize research as a setting for consciousness raising and social change (Campbell & Wasco, 2000). The dominant ethical discourses and practices can be transformed through engaging in dialogue with women who occupy both the centre and the margins of power (Donchin & Purdy, 1999; Nicholas, 1999). Such collaboration between researchers and research participants, and between Western and non-Western bioethicists
“reflects a process of mutual influencing to discover shared and unshared values through which truly fair and ethical procedures can be derived” (Fisher, 2000, p. 130). Developing and applying
guidelines that espouse more relational forms of autonomy in and outside of the informed consent process is one such step in the (right) ethical direction.
This brings the discussion to a pivotal question underlying the current study: What contribution can social science studies such as the one here make to the ethical conduct of biomedical and health research? It has been argued that, until recently at least, the field of bioethics has not fully acknowledged the role and implications of social science research for the practical
implementation of ethical principles and theories. As a result, there has been a significant gap between ethics as it is theoretically presented in bioethics and the way in which ethical
deliberation actually takes place in real world situations. Hedgecoe (2004) contends that this gap can isolate bioethics from practice and undermine the validity of its claims. “While it is possible for social science research to support the principlist approach, for example, it is also quite likely that in some, if not many cases, the evidence will not fit into this particular way of structuring the social world” (Hedgecoe, 2004, p. 137). The relationship between bioethics and the empirical social sciences is now receiving greater attention. Many have begun to acknowledge that social science research can contribute in a meaningful way to philosophical and medical bioethics (Emanuel, 2002; Haimes, 2002; Hedgecoe, 2004; Hoffmaster, 1992; Yeager, 1996; Zussman, 1997). Social science studies on bioethical topics can yield useful information that, while not morally determinative, is morally relevant (D.R. Wassenaar personal communication with H.
Richardson, December 2004). For example, empirical evidence is the basis of decisions about whether children of a particular age are competent to give informed consent, but this has serious implications for ethical medical treatment and clinical research. Thus, such empirical research can be regarded as basic moral work (Hedgecoe, 2004). Furthermore, ethics is no longer a purely
abstract discipline, as can be seen from the growing interest in empirical investigations and applied work within the fields of both philosophy and bioethics (Haimes, 2002).
Collaboration between ethicists and social scientists can thus enhance the way that ethical work is conducted and, through social science‟s concern with connecting the particular with the general, and empirical data with theoretical explanations, the scope of issues open to ethical scrutiny could be expanded (Haimes, 2002; Hedgecoe, 2004). For instance, social science research into the interactions between the prevailing values in society and those of its individual members can provide empirical evidence against which ethical intuitions can be checked
(Yeager, 1996). In addition, the contribution that social science research could make to
understanding not only ethics but ethicists themselves, and how their social identity can affect their influence on the conduct of ethics, could be a matter of practical as well as theoretical interest for bioethicists (Haimes, 2002). In other words, social science theories are useful for illuminating how ethics is historically and culturally located and can shape and be shaped by social forces (Haimes, 2002). It is clear, therefore, that traditional bioethics should engage with the social sciences, acknowledging that the way things are can tell us something about the way things ought to be. The current social science study has attempted to contribute in this way to how ethical principles such as autonomy are practically applied and experienced in real world contexts.
This section has attempted to show links between the theoretical concepts that were discussed in the preceding sections, and the research context, showing how relational autonomy models are practically applicable in the ethical conduct of research. It is only through locating relational
principles of autonomy within real-world contexts that the value of these concepts can be demonstrated. In the summary section that follows, the theoretical concepts explored in the literature review above will be linked to the empirical aims of this study.