A difficult dialogue
Um diálogo difícil
Cynthia Andersen Sarti
Universidade Federal de São Paulo. email@example.com
Firstly, I would like to compliment the authors and this journal on the initiative to promote the public debate on the inadequacy of the norms that govern the Committees for Ethics in Research (known in Portuguese as CEPs) in Brazil, regarding qualitative research developed in the Human and Social Sciences.
The current norms have been causing serious constraints to fieldwork and analyses that employ qualitative methodologies. The debate is particularly relevant and urgent, since there is a consensus about the need to create norms for research procedures, in their ethical aspects, in all the areas of knowledge. This is due to the fact that sometimes the results of scientific research do not favor the researched groups or people; they may even harm them. We know that scientific/technological progress and human progress do not necessarily walk together. The problem is that we need to establish norms respecting the specificities of the different areas of knowledge.
Guerriero and Dallari go straight to the point when they analyze the inadequacy of Resolution CNS 196/96 of the Ministry of Health, which creates rules for "researches involving human beings". The authors argue that the inadequacy of the rules in relation to qualitative research concerns the incompatibility between such rules and the interpretative paradigm of the human and social sciences. They strengthen the point of view of the researchers in these areas, expressed in diverse critical analyses about the action of the CEPs1-5. They highlight aspects that are relevant to the discussion about ethics in qualitative research: the researcher's subjectivity as a tool in his/her work; the specificity of the techniques; the interpretative character of knowledge; the character of contextualized activity, which makes it difficult to think about scientific production as strictly "individual"; the text that reveals different voices and points of view; the relationship between researcher and research subject as a problem.
The authors show that in the interpretative paradigms, based on which qualitative research is developed, "ethics is intrinsic to the research methodology". It originates from the research itself; it is "not an aspect that is outside it, to be evaluated separately". The discussion on ethical aspects continually accompanies qualitative research in all its phases: data collection, analysis and results presentation. Thus, Guerriero and Dallari conclude that "it is essential to consider the paradigms that guide each research study, so that it is possible to analyze their ethical aspects". One can understand from this that each paradigm has its own evaluation rules. And here lies the difficulty faced by the CEPs.
The authors refer to the documents that influenced Resolution CNS 196/96, the Belmont Report and the CIOMS 1993 guidelines, which assume the existence of only one research paradigm, based on its application to the biomedical and behavioral areas. They show that the Brazilian norm extends their limits and encompasses all the researches that "involve human beings", from whatever knowledge area. This posture suggests, according to Oliveira6, "a certain extrapolation of domains" that he calls "biocentrism", as it "arbitrarily imposes a local, biomedical view on research practice, or on ethics in research practice, as if it were universal". As the authors show, from that, several kinds of problems arise.
Considering the area of Health, it is important to highlight that the interdisciplinary perspective is fundamental, since all the scientific fields involved in that area depend on the contribution of the others. The object of the Health area transcends the field of each discipline. When one knowledge field is assimilated into another one, however, they lose the alterity that constitutes them as specific areas and we are before the hegemony of one over the other, which obstructs dialogue. There is always some degree of tension in this dialogue, as an equitable position of the postulates of the distinct fields of knowledge is searched. Nevertheless, there are ways in which this dialogue is possible. One can resort to the mode of functioning of the human sciences, according to which, the paradigms neither overcome nor succeed one another. They coexist, preventing us from looking for an imaginary victory of one over the other7, which would hinder the coexistence of distinct references.
The authors argue that the paradigms of each one of these scientific fields are radically different. There is no possible identification. In the Health area, the difference of paradigms is constitutive. There are distinct views and equally different ways to approach the object. Therefore, their articulation can only happen based on the recognition of the differences. Thus, the first movement towards dialogue is separation, so that the next step may lead to an encounter3.
As the interdisciplinary practice is a social practice that involves, as such, power relations, it brings with it the risk that the features of one of the disciplines are dissolved, due to the hegemony of the other one. When this happens, alterity is extinguished, together with the possibility of the necessary exchange in a dialogic field. The development of the fields must be allowed, based on their own epistemology and on their own scientific criteria, which are recognized as different. Dialogue is obstructed when one field is assimilated into the other, as occurs in the guidelines that govern the CEPs.
Taking into account this diversity of paradigms becomes a necessity in the scope of the ethics committees, as argued by Guerriero and Dallari, so that their norms and codes can be applied to different kinds of research. This, in itself, is an ethical posture, because it is established based on the recognition of distinct fields of knowledge. The ethical discussion supposes the existence of confrontation and negotiation between distinct points of view, because the differences are "immeasurable" (or would it be better to say, insurmountable?).
The authors summarize the aspects around which the ethical discussion gravitates, when one reflects on the mismatches between the CEPs norms and qualitative research. It is worth to stand out the relationship between the researcher and the research subject and the polemic regarding the informed consent (in Portuguese, Termo de Consentimento Livre e Esclarecido - TCLE).
The issue of the ethical regulation of research by the CEPs has been criticized particularly in the scope of anthropology. This issue was summarized in the book edited by the Brazilian Anthropology Association4. As anthropology, in its origin, studies cultures that are different from that of the researcher, it views the discussion about the relationship between the anthropologist and his/her "object" of study as a problem that is not only ethical and methodological, but also epistemological. Anthropological knowledge was built precisely within this set of problems. If the relationship is not established in adequate terms for both sides, the research cannot be carried out. Thus, every scientific discipline, to validate itself, is constituted from the dialogue between the scholar and his/her peers; however, texts that are valid in the area of anthropology must be supported, in addition, by the conditions of the dialogue between the researcher and the research subject8.
I start from the assumption that the ethical discussion in research must take into account the conditions in which this discussion occurs, so that it happens based on the principle of equity. As social scientists, we know that the same phrase is heard differently, depending on who speaks. The more a person is socially invested with authority, the more he/she will be heard. The legitimacy of the discourse of a recognized scientific authority is guaranteed by the place the scientist occupies in society. Therefore, the terms of the relationship among those who speak will give meaning to what is said. This means, finally, that the ethical discussion involves a political discussion, which is to say that it is permeated with the power relationships in society. The place of the scientist/researcher, and also the place of the research subject, is inscribed in a social and symbolic order that defines in advance the place of each one of them. This order which the scientist can either reproduce or question defines who is the object and who can be the subject of knowledge.
The TCLE is based on the assumption that the research "subject" has the autonomy to choose. We should ask about the conditions of possibility of the existence of this autonomous subject, who freely consents. Countless questions emerge: what are the terms of the communication between the researcher and the research subject? What place each of them speaks from? How does one see and face the other?
The consent of the research "subject", particularly in the area of Health, leans on the authority of the professional/researcher, whose discourse is assimilated as a knowledge that is socially legitimated and recognized. This is the way in which this discourse will be internalized by individuals, mainly by the "patients" placed in a situation of vulnerability. Given the identification between knowledge and power, the implicit risk in this assimilation leads to the notion of symbolic violence9. The possibility of exercising this form of symbolic violence emerges when there is no discussion about the bases on which the consent of the research subjects is founded. It is necessary to ask why the research subjects consent1, what their reasons are, mainly when they are "patients". Moreover, we should ask whether the research subjects can refuse to consent, exercising disobedience as an ethical exercise10.
Thus, I agree with the authors when they suggest that the TCLE should be considered as a principle, but not as model of procedure. The form of consent depends on the manner in which the relationship between the researcher and the research subject is established and developed. This applies to anonymity, another aspect to be negotiated and decided with the informants. To be clearly explicit on these matters, throughout the entire research study, gives the ethical dimension of qualitative research.
In this perspective, it is fundamental to highlight, as the authors do, that, in qualitative research, we do research "with" human beings, which emphasizes the relational and dialogic character of research. Thus, the research should be viewed as a handicraft process that is built at every stage6. The consent is not "given"; rather, it is built throughout the research. It is a process that needs to be continually reiterated. Thus, the researcher often "defines, with the research subject, the aim of the study, as well as its strategies". He/she negotiates with the research subject, his/her interlocutor, the terms of the research. Therefore, the ethical consent cannot be given in advance, before the research experience. It is present in all the stages, in situ and, afterwards, ex situ, as Ramos11 puts it. I agree with the authors when they say that the principles of autonomy and beneficence, which support Resolution CNS 196/96, are encompassed in qualitative research, "due to their own characteristics": the research subject not only consents, but also interferes in the research development.
Thus, there is a paradox in the way in which the Committees for Ethics in Research were constituted in Brazil. They were the product of an intense social struggle against the abuses of the so-called scientific research. However, they instituted other forms of denial of the Other. By universalizing assumptions and procedures of biomedical research, the guidelines ignore other fields of knowledge. The ethical discussion is related to the recognition of alterity; therefore, by taking as an universal paradigm what refers to one field of knowledge, extinguishing the differences, this basic principle is denied. Thus, again, I agree with the authors when they say that it is fundamental to elaborate specific guidelines for research studies that are oriented by the interpretative paradigm, and that these guidelines should be effectively incorporated in the CEPs, by all the members of these committees, in order to avoid their segregation in separate spaces. One last issue remains: how should these guidelines be elaborated? It is fundamental that they are approved by the scientific associations of each area of knowledge.
CSM Ventura translated the article into English.
1. Braz M. Autonomia: onde mora a vontade livre. In: Carneiro F, organizadora. A moralidade dos atos científicos: questões emergentes da experiência dos Comitês de Ética em Pesquisa envolvendo seres humanos. Rio de Janeiro: FIOCRUZ/Ministério da Saúde; 1999. [1º Seminário; 1998 set 29-30; Rio de Janeiro] p. 91-100.
2. Carneiro F, organizadora. A moralidade dos atos científicos: questões emergentes da experiência dos Comitês de Ética em Pesquisa envolvendo seres humanos. Rio de Janeiro: FIOCRUZ/Ministério da Saúde; 1999. [1º Seminário; 1998 set 29-30; Rio de Janeiro].
3. Sarti CA. O reconhecimento do outro: uma busca de diálogo entre ciências humanas e ciências da saúde [tese de Livre Docência]. São Paulo (SP): Departamento de Medicina Preventiva/UNIFESP; 2003.
4. Víctora C, Oliven RC, Maciel ME, Oro PA, organizadores. Antropologia e ética: o debate atual no Brasil. Niterói: Editora da UFF; 2004.
5. Machado LZ. Ética em pesquisa biomédica e antropológica: semelhanças, contradições, complementaridade. In: Guilhem D, Zicker F, organizadores. Ética na pesquisa em saúde: avanços e desafios. Brasília: Letras Livres/Editora UnB; 2007. p. 119-142.
6. Oliveira LRC. Pesquisas em versus pesquisas com seres humanos. In: Victora C, Oliven RC, Maciel ME, Oro PA, organizadores. Antropologia e ética: o debate atual no Brasil. Niterói: Editora da UFF; 2004.
7. Oliveira RC. Sobre o pensamento antropológico. Rio de Janeiro: Tempo Brasileiro; 1988.
8. Rouanet SP. Ética e antropologia. Estudos avançados 1990; 4(10):111-150.
9. Bourdieu P. A dominação masculina. Rio de Janeiro: Bertrand Brasil; 1999.
10. Ribeiro RJ. Uma ética da desobediência. Informativo Semestral da Fundação MacArthur: perspectivas em saúde e direitos reprodutivos 1999.
11. Ramos AR. A difícil questão do consentimento informado. In: Victora C, Oliven RC, Maciel ME, Oro PA, organizadores. Antropologia e ética: o debate atual no Brasil. Niterói: Editora da UFF; 2004.