Ethical aspects considered by researchers who use qualitative approaches in health

Aspectos éticos considerados pelos pesquisadores que usam abordagens qualitativas em saúde

ARTICLE ARTIGO

Ethical aspects considered by researchers who use qualitative approaches in health

Aspectos éticos considerados pelos pesquisadores que usam abordagens qualitativas em saúde

Everardo Duarte Nunes

Departamento de Medicina Preventiva e Social, Faculdade de Ciências Médicas, Universidade Estadual de Campinas. Rua Tessália Vieira de Camargo 126 Caixa postal 6111, Barão Geraldo 13083-970 Campinas SP. [e-mail]

ABSTRACT

The paper first analyzes the ethical question of qualitative researches from the philosophical viewpoint, and the bioethical question as an interdisciplinary gap that enlarges from the seventies. Afterwards, the question on qualitative research considered as technique and art is raised and understood in a philosophical way of thinking science as a theoretical body, which is epistemically organized in the face of the social reality investigation, and as a movement instituted to defend and discuss the properties of these methodologies. Anthropology is used as an example, and some parts of the codes of professional ethics of anthropology, sociology and psychology are presented. Finally, particularities of the social science fields are discussed, as well as the need to develop a code of ethics for qualitative research. In addition, ethical ways to work in social researches are suggested.

Key words: Ethics and bioethics, Qualitative research, Ethics in social and human sciences, Codes of professional ethics

RESUMO

O trabalho analisa a questão da ética nas pesquisas qualitativas a partir da colocação da ética no campo filosófico e da bioética como espaço interdisciplinar, que se expande a partir dos anos setenta. Passa-se, em seguida, à questão da pesquisa qualitativa vista como técnica e arte, entendendo-a como forma filosófica de pensar a ciência, como um corpo teórico, que se estrutura epistemicamente frente à investigação da realidade social e como um movimento que se institui na defesa e argumentação das propriedades dessas metodologias. Destaca-se, como exemplo, a antropologia e apresentam-se alguns trechos dos códigos de ética profissional da antropologia, sociologia e psicologia. Na terceira parte do artigo, discute-se a procedência de um código de ética para a pesquisa qualitativa e as particularidades do campo das ciências sociais e algumas sugestões de como trabalhar de forma ética nas pesquisas sociais.

Palavras-chave: Ética e bioética, Pesquisa qualitativa, Ética em ciências sociais e humanas, Códigos de ética profissional

La ética sólo en manos de los filósofos no es

muy buena idea - no es, como diría Aristóteles,

cosa muy prudente-. La ética puede y debe,

estar también en manos de los biólogos, de los

etólogos, de los sociólogos, de los antropólogos, de

los economistas, etc.; de hecho, puede y debe,

estar en manos de todos, porque todos tenemos

intereses en ella. 'Todos' quiere decir la especie

humana entera, en comunidad con los otros

seres vivientes. Nada menos.

Ferrater Mora¹

Initial considerations

Discussing this theme is challenging in many ways, since one has to face three issues whose studies are crossed: ethics, qualitative research and health. These are issues that are structured in different fields or by practices whose dynamics is found in the know-how – to use Bourdieu's² language.

The theme is so complex that it has been of concern to many scholars of the social and humanity areas, in the last few years – especially when it comes to the confrontation with the vast development of biomedical sciences and of laboratory and clinical researches involving human beings – leading to the creation of a specific area – that of bioethics.

We have no intention whatsoever of being pretentious and dealing with all the thematic diversity involved in the vast literature produced in the area, as well as in the different theoretical and philosophical lines that has been bound to the ethics issue throughout history. We attempt only to bring to discussion some information that may subsidize the theme – as proposed by this seminar's organizers – seeking to highlight the means by which the social sciences have faced this debate in their investigations, especially when it comes to qualitative approaches, although we, obviously, cannot exclude the quantitative approaches used by social scientists in the health field of being object of ethical concerns. We are, evidently, considering that it is not the methodology per se that define the search for project ethicity, but their subjects – in this case, human beings, whether individuals, groups, families or communities. In this sense, among the works recently concluded that dealt with this theme, we can call attention to that of Iara C.Z. Guerriero³, in which the author carefully analyzes not only ethical aspects of qualitative research in health, but also collects indispensable documents to back national and international guidelines for ethics in research.

Prior to this study, which is rather complete, there is some reference to those who dedicate time to this incipient study field – on the one hand, there is socio-anthropology of ethics in research and, on the other, there is ethics in social research, arousing discussion of the limitations of the bioethical perspective.

One of the most important scholars in the field of social sciences in health, Renée Fox, together with Judith Swazey, has written that: Bioethics is not just bioethics [...] it is more than medical. Using biology and medicine as metaphoric language and as symbolic media, bioethics treats [...] with nothing less than beliefs, values and norms that are fundamental to the society, to their cultural traditions and to the collective consciousness⁴. In another work, she states that bioethics represents a social and cultural phenomenon that requires continuous analytical effort. She also calls attention to the need for studies on the value system – central to bioethics. The author refers to a bioethical scholar, Daniel Callahan, who proposes a change in the ethosof bioethics by declaring that bioethics (i.e., "biomedical ethics", as he calls is) "must move to a new phase which should force it to rethink its role, its methodology, its relation with other areas of studies and institutions"⁵. By citing Callahan, Fox argues that the idea of an "applied ethics" must consider not only a personal decision taking procedure, but one of political construction as a whole, since one can see that many deprived situations are defined as social problems rather than ethical problems "a dichotomical distinction that is pervades bioethics"⁵.

This standpoint is also discussed by Pitelli da Guia⁶, in her dissertation thesis when she understands that bioethics is "like a cross-disciplinary and privileged space between medicine and philosophy, and even in connection with other fields of study, such as sociology or history of science". The author places her deep disquiet, supported by the post-modern discourse – full of ambivalence and controversies, challenges and possibilities of fulfillment, especially when she says that "the promise of a moral foundation in the law is yet another dream that modernity has left as an incomplete legacy".

The author's analysis is based on extensive bibliographical research into two nucleus: a) that of ethics in the technical discourse, interpreting 163 texts published between 1990 and 1996 on three themes: renal transplantation (87), cares taken with terminal patients (64) and in vitrofertilization (22) from the following journals: Journal of American Medical Association and New England Journal of Medicine; b) that of ethics in the discourse of ethics, researched in 270 texts, 92 of which were published at the Journal of Medical Ethics, 119 at the Hastings Center Report and 59 at the Journal of Medicine and Philosophy.

However, returning to a previous topic, we can agree with Ferrater Mora (1912-1991) who states that: "there can only be a history of ethics within the landmark of the history of philosophy"⁷, however, as one can see in this text's epigraph, the Spanish philosopher does not reduce ethics to philosophy, following a tradition offered by Paul Foulquié (1893), when he presents us to a simple, yet complete definition: "ethics is the part of philosophy that seeks to determine the aim of human life and the means by which to reach it". According to Vasquez⁸, in his comment to Foulquié and Lalande's work, Every ethical reasoning is base don two essential questions: what is good, what is evil; which things are good, which things are bad. Ethical reflection must always start from spontaneous knowledge, i.e., every man must know that there are actions that must not be practiced and others that must be practiced. Thus, one discovers a key concept – which only exists in Ethics and in Law, the must-be. Without any doubt these are founding ideas of ethics in medicine and in health.

According to Schramm⁹, Bioethics can be considered ethics applied to the human's actions referring to vital phenomena and processes; more specifically – according to the distinction made by Aristotle in his Politics (I, 2, 1253 to 7-5) between organic life (zoe) and practical life (bios) – it can be considered as a group of concepts, arguments and norms that value and ethically legitimate human actions [whose] effects deeply and irreversibly affect the vital systems – either in concrete terms or potentially speaking. Schramm⁹ himself offers a dense discussion on the theme, arguing that scholars have been seeking to broaden the meaning of bioethics as a field for investigation, aiming at [critically] understanding the consequences of an action, answering to important philosophical questions pertaining to the nature of ethics, the value of life, what it means to be person, the meaning of human being [including] political consequences and the paths taken by science – as well as its means of control. Undoubtedly, these ideas are on the basis of a kind of ethics that can be seen in medicine and in science, field that are stretched to the areas of public/collective health.

Thus, the number of efforts carried out in order to advance in terms of the applied bioethical issues is noteworthy. According to Fox⁵, in the 60s, and until the mid-70s, the focus of interest was seen on the importance and difficulty of obtaining voluntary consents from research subjects and from those who were unable to manifest their positions (children, prisoners, terminal patients, etc.), when it came to experiences with human beings. In the late 70s, bioethics was evidently in full expansion and institutionalization. Besides constituting a field of knowledge with vast production, it invades public domain, and bioethical issues will, from then on, be seen in juridical-legal spheres, in the media, in governmental commissions that are summoned to study the problems related to research in medicine. It is worth remembering hat the Encyclopedia of Bioethics, organized by Wareen T. Reich dates of 1978, and, as can be seen in the preface: "[It] is unusual, perhaps unprecedented, for a special encyclopedia to be produced almost simultaneously with the emergence of its field"⁵.

In Fox's⁵ analysis, the movement towards bioethical studies is such that there is "A kind of 'everything is ethics' syndrome". Therefore, a question is posed: what should be included in the field of bioethics? Without going into detail of what has been seen in relation to the American Nation – which would be a diversion from our theme - it seems that the general standpoint taken by Renée Fox can be applied to other realities, i.e., the idea that one cannot understand bioethics without associating it to the current social thought, to values and beliefs, to religious variables, to certain philosophical movements, to the individual-social relationship, to problem definitions – whether they are social or ethical – to ideological orientations – often polarized as conservative or progressive. These are undoubtedly issues that slowly lead to the necessary approximation of bioethics and social sciences, but that in the 90s were still tentatively asked, and bearing a lot of tension. They will be seen in another scenario: that of qualitative research.

The technique and art of confrontation in qualitative research

A number of questions are posed, today, in relation to scientific methodology, after the classical constructs brought by positivism to science especially due to the emphasis given to the naturalization of knowledge, based on researches car ried out in the natural sciences. Among such questions, one is especially important – that of qualitative research. Recently¹⁰, I have situated this question by reminding that the recrudescing event of the use of techniques such as oral reports, life histories, etc. have placed the qualitative investigation problem and, as Minayo¹¹ puts it, especially when these questions are understood as capable of incorporating the issue of meaning and intentionality as inherent to the actions, relations and to social structures [...] (our emphasis). As stated by the researcher, this issue leads us to the theoretical field in the social approach, forcing us to place a few questions: 1) is it possible to consider scientific an investigation that, whilst taking into account the two characteristics cited above cannot put them in practice in terms of quantity? In Positivist terms, quality is converted in variables, regardless of its constitution by individuals.

Two other movements, i.e., comprehensive sociology and Marxist dialectics will take different stands: the former considering subjectivity as a main source of reference in the social constitution, besides being inherent to objective understanding; the latter will dissolve the distinction between quality and quantity, macro and micro, interior and exterior. Minayo states that Marxist dialectics encompasses not only the relation systems that construct the means by which knowledge which is external to the subject is constructed, but also the social representations that constitute the objective relationship experiences lived by social agents that attribute meanings to it¹¹. We agree with the author when she says thatThe critical discussion of the concept of "Qualitative Methodologies" induces us to think them not only as ideological alternatives to quantitative approaches, but as a means to deepen their social nature, and the difficulties of knowledge construction that partially grasp its unfinished form¹¹.

To us, qualitative methodologies constitute a field in which (1) a philosophical mode of thinking sciences and research, (2) a theoretical body encompassed by the several trends that are structured to deal with the investigation of social reality and (3) a movement which has been organized in defense and argument of these methodologies properties are all crossed. With no intention of entering into the concept discussion of field, but it's necessary to remember Pierre Bordieu² when he defines field as""the locus" where a concorrential fight between agents is established around specific interests that characterize the field at stake." In this space, power relationships that aim at, by means of competition, obtain symbolic capital are manifested. The field is structured from the uneven distribution of a social "quantum" (social capital), which determines the role that a specific agent plays in its core. An important aspect to be highlighted is the one which refers to the idea that different social fields are organized around objectives and specific practices, and that they are presented contained by their own logic and basis which structures the relationships between agents within them. Considering that each field has a dominant form of capital (e.g.: art, harmony, aesthetics), which is constituted via concepts that acquire value statues, that guide event the sense of belonging to the field, it is in this sense that we adopt this concept as reference for our analysis. We assume that the symbolic and social capitals that underlie qualitative methodologies – and that compose this construction – guarantee the suitability of their adoption, their understanding, and even their autonomy (or lack thereof) of this field. For those studying the concept of scientific field, the degree of autonomy of a scientific field becomes fundamental, and can be thus measured: 1) In the power that this field may have to define production norms; 2) in evaluation criteria of its products; 3) in the legitimacy to reinterpret external determinations, from the working principles themselves.

There is vast literature on qualitative methodologies, and its use by Brazilian health researchers has been of meant important contributions to the field – especially those of Minayo¹¹, Minayo and Deslandes¹² – as I understand it, and as many other researchers, such as Schraiber¹³ understand it, it is in qualitative researches that we can notice more emphatically the technique and art of investigation. This does not mean that, in other research modes, the structural design of scientific work lacks what I have come to identify as "aesthetics of investigation", which is present in its design, data collection and publicizing. A kind of aesthetics which can only be fulfilled when associated to the "ethics of investigation".

Sawaia¹⁴ formulates that some of the aspects present in qualitative research are thoroughly related to ethical issues. Among other aspects, the author states that qualitative research is interested in the phenomenon, the place of the object, which is part of the sense, imagination and creation category; in this category, distinctions between fact and value are blurred, one seeks to situate the individual within the complexity of the universal. Besides, as we will be able to see below, these methodological proposals re-situate the relationships between researcher and the researched.

Undoubtedly, ethical issues are implicit in qualitative investigation, in any of the humanities fields: anthropology, education, sociology, linguistics, etc., and they took different paths when seen under the different fields of studies.

The anthropologist Roque de Barros Laraia¹⁵ tells us that in the 1960's, when he started to carry out investigations in social anthropology, there were only one code of ethics, a very simple one, that could be summarized in three items: a) the anthropologist cannot become sexually involved with their informants; b) the anthropologist must respect their informants and defend the latter's interests, acting as mediator between them and the national society; c) the anthropologist has a commitment with scientific truth. He goes on to say that this was an "unwritten code; it was rather a customary code, which was passed on orally from one generation of scientists to the other." This researcher's report is of crucial importance, if we consider that, at that time, studies were by and large focused on relatively isolated societies that lived in such a distant world that we did not consider anti-ethical to publish their names in our works. We had no fear of invading our informants' privacies, especially because, in most cases, this was a non-existing concept in their cultures. Rarely did we become uneasy with what could mean the impact of our presence in those small communities. When, in 1994 – therefore, 30 years later –, the same scholar wrote this account, he pointed to the radical changes which our world's reality went through; there are new objects of study, the customary code does not seem to be appropriate or sufficient to meet the needs of the current moment. Thus, the board of directors of ABA (Associação Brasileira de Antropologia – Brazilian Anthropology Association), whose term of office was from 1986 to 1988 decided to formulate a code of ethics.

In the mentioned presentation, Laraia recovers a text written by Jorgesen¹⁶, which seemed to us to be extremely adequate when we discuss the relationship between knowledge/research/ethics. From the long considerations made by Laraia, we have taken an excerpt that, as we have pointed out, is very relevant: to him, ethical issues pertaining to anthropologists arise from their relationships with the people that they study, their professional relationships with other anthropologists, their relationships with their supporting institutions and foundations, their relationships with the government of the countries in which they carry out their researches and their relationships with their own governments.

Informant privacy, community consent, data confidentiality are the aspects that found these scientists' ethical perspective. We highlight a basic aspect of qualitative research, that which states that "when we gain the trust of our informants, we establish with them a contract of honor, we exchange our informants' information and trust for our discretion". According to Debert¹⁷, anthropology was the first field of studies within social sciences to write a code of ethics – area in which one is not concerned with the denouncing of moral conflicts in bioethics. It would be naïve and disastrous to propose a court whose function would be to decide over moral differences. It is, however, essential that, in the humanistic sciences, we debate these domains that affect our daily lives and that of the groups we research¹⁷. This is the understanding of many researchers in that regardless of scientific paradigms, what is sought is to avoid damages to research participants, to researchers themselves, to the profession and to society in general, as pointed out by Celiani¹⁸.

In fields other than anthropology – such as educational research and applied linguistics – that use qualitative methodology, essential questions are also posed. According to Celani¹⁸, these areas use procedure that require that "informed and clarified consent" is not external to the development of investigation per se, i.e., it occurs by means of "continuous dialogue and consent reaffirmation throughout the research." This allows the researcher to be certain that participants have understood the research objectives, their roles as participants, besides making it clear that they are free to give up on their participation at any time, she says.

In general terms, all these areas of human sciences have sought to work with ethical issues, as can be seen in the concern they have to establish their "codes of professional ethics". We will not go into detail, but will take the example of three codes, only to see research aspects in each one. In the anthropologist's code of ethics¹⁹, which is divided into three aspects – researcher's rights, the rights of the population which is the object of research, and the anthropologist's responsibilities, - we will taken the following excerpt:

The anthropologist must respect the following rights of populations which are object of research:

1. The right to be informed of the nature of the research.

2. The right to refuse to take part in a research.

3. The right to have their intimacy protected, as per their cultural standards.

4. The guarantee that their collaboration with the investigation will not be used to jeopardize the investigated group.

5. The right of Access to the results of investigation.

6. The right of the populations' authorship on their own cultural production.

It is the anthropologists' responsibilities:

1. To offer objective information about their professional qualifications, as well as the qualifications of their colleagues whenever it is necessary for the work being implemented.

2. In the work design, not to omit relevant information, except in cases previously foreseen.

3. To carry out their work within the tenets of objectivity and rigor inherent to scientific practices.

The sociologist's code of ethics²⁰, composed of 38 items, of which we have extracted part of Chapter II – About obligations:

l) When carrying out studies and researches, respect the dignity of people and groups involved; they must be informed of the risks and predictable results deriving from their information and participation;

m) Seek to make it possible for information gathered throughout courses of studies and researches to be returned to the social subjects involved;

n) Inform authorities and specialized organizations on any act of coercion, and physical or moral aggressions suffered while exercising their profession;

o) Continuously improve their knowledge, allowing it to serve to strengthen society's organization and awareness.

We cite also the psychologists' code of ethics²¹, which, according to Resolution CEP Number 010/05, determines the following for the research area:

Item 16 – When carrying out their studies, researches and activities for knowledge production and for the development of technology, the psychologist will:

a. Evaluate risks involved both in the procedure adopted, and in the publicizing of results so as to protect the people, the groups, organizations and communities involved;

b. Guarantee the voluntary characteristic of the participation, by means of free and clarified consent, except in situations envisaged by the law, respecting the principles of this Code;

c. Guarantee anonymity of people, groups and organizations except if they are contrary to this;

d. Guarantee access of people, groups or organizations to research and studies results whenever they wish after these have been concluded.

As we can see, the three examples highlight that, when it comes to ethics in research, the codes are utterly similar, which stops researchers and researched population from becoming "moral strangers" - to use Engelhardt's expression⁹ -, and they clearly point to how the investigator's must behave in relation to the reality being investigated – whether it is cultural, social or psychological.

Codes are actually important, although they do not bring to light the procedural issues that take place in research, nor do they limit the boundaries of relation specificities between those involved in the process.

In this sense, I return to Laraia's¹⁵ text since, when discussing cultural relativism, the author states the standpoint of Otávio Velho – anthropologist who criticizes the "modern nihilist meta-discourse", stating that if puts aside central problems. Besides, he also reports how Cardoso de Oliveira deals with this matter. According to this anthropologist, and following Karl-Otto Apel's train of thought, from whom he borrows the following excerpt, the need for universal ethics – i.e., one that is obligatory to human society as a whole – was never so urgent as it is today, in the age of a unified civilization, planetarily speaking, due to the technological consequences of science. On the other hand, the philosophical task of rationally basing universal ethics has never been so difficult – and, even, desperate – as it is in the age of science: (due to) the scientific idea of neutral, non-valorative normative "objectivity". We have to remember that Karl-Otto Apel (1922) is one of the founders of what has been known as Ethics of Discourse, further discussed by Jürgen Habermas. In an interview, when he visited the Federal University of the State of Minas Gerais, he answered the following question – What are the difficulties preventing people from reaching a list of principles that may rule the life of modern human beings? – by saying – Apel: It is necessary to distinguish between individual attitudes from universalistic conditions for life in groups. Each person must seek what is better for themselves. It is the individual that makes their own professional choices, for example. We live in a free space for individuality. For this reason, I cannot state, under this perspective, a universe of principles or prescriptions that must be followed. Everyone has to try to find their unique and authentic path.

Universalistic rules apply to areas such as justice, in which there is collective co-responsibility, which means that we are inscribed in a foundation of universal principles.

Nonetheless, it is in H. Gronewold's text that Cardoso de Oliveira finds an extremely appropriate formulation, even for our objectives – to find a closer understanding point between researchers and researched in social spaces. H. Gronewold supports the idea of the existence of three social spaces in which ethical procedures are used: the family space, the matrimony space, and that of the neighborhood which he calls the micro-sphere; the space of national politics – which he calls themesosphere; and the space of vital interests shared by the entire human kind, which even encompass the destiny of human kind – which he calls macro-sphere. In this last classification, the ethical principles are seen in that they are guided by a universalistic perspective – therefore unlikely of allowing relativization¹⁵, according to Laraia's capable analysis.

There is no doubt that what has been pointed out above brings us to the great problems faced by researches in social and human sciences, from the ethical point of view. I make mine Guerriero's words – stated in her dissertation thesis – when she says that One of the differences between Biomedical research and research carried out in the Humanistic and Social Sciences is that the former does research on human being and the latter, with human beings³. By bringing to the arena the idea that research participants are, in fact, subjects, treated as people, and that these researches, usually "do not interfere on people's bodies, but approach them via the participants' concepts", the author offers a clear guide for criticism that is posed in terms of biomedical ethics, that is formalized in an instrument – the CNS Resolution 196/96 – and is put into practice when the

TCLE (Termo de Consentimento Livre e Esclarecido) – Term for Free and Clarified Consent – is written.

I take social research to be the meeting of technique and art, and considering that it is, in essence, a social construction, rather than simply "operational" (to use Schraiber's¹³ words) we cannot separate the poles that, in the very dynamics of this type of research, constitute the investigation know-how. Bruyne et al.²² clearly formulate that, throughout its phases, the research is set in a societal environment in which the following aspects are articulated: the field of social requirement, the axiological field, the doxological field, and the epistemic field. According to these authors, The autonomous field of scientific practice - autonomy whose shakiness is noticeable - can be conceived from the methodological point of view, with the articulation of different areas, of different scopes that determine a place in which the research is presented as caught in a field of forces, submitted to certain fluxes, to certain internal exigencies. In this sense, the quadripolar methodological space, inter-related as a process, articulates four spheres: the epistemological, the theoretical, the morphological and the technical spheres.

The above mentioned meeting of areas is put into action through the ethics of investigation which differs from the natural sciences, and both in terms of knowledge discoveries, and in terms of its exhibition, it has been summarized into the perspective that the humanistic sciences take human beings as object and subject, and that they aim at knowing the interior of these subjects in terms of their representations, symbols, meanings and senses (or meanings and feelings, according to the Anglo-Saxons). These are the characteristics that are reflected in the construction of a "code of ethics for qualitative research".

Is it possible to have a code of ethics for qualitative research?

"Every research that deals with human beings may present ethical dilemmas."²³

The ideas presented up to this point reflect philosophical, theoretical and technical stands that, as we have stated in the initial notes, challenge those who venture to work in such complex dimensions as ethics, qualitative research and health, but they make sense, especially when social researches in health take on some of the most promising research developments. This is evident when we look at works carried out in other countries – such as Canada, for example. According to Guerriero's analysis, the documents were designed to regulate biomedical clinical researches and "the further apart the research is from the positivist/experimental paradigm – thus, from TCPS -, the more problems posed for a given researcher to apply the guidelines proposed in this document". Guerriero refers to TCPS (Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans, and to the SSHWC (Social Sciences and Humanities Research Ethics Special Working Committee).

It is interesting to notice that even in areas of clear proximity with biomedical research, such as epidemiology, researchers feel that there is in adequacy from the part of some of the procedures recommended in current normative documents published by CONEP for dealing with the aspect of Ethics in Research in epidemiological studies in and for Publish Health and what actually exists is "a lack of adequate institutional solutions for storing and keeping questionnaires and forms used in research."

These are some of the conclusions published in a recent document written by the Epidemiology Commission of the Brazilian Association of Post-Graduate Studies in Collective Health²⁴. As the epidemiologist, Rita B. Barata states it: Relationship between ethics and epidemiology go far beyond the simple consideration of the ethical aspects linked to the practice of research on human beings. They unfold into different plains that stretch from the political commitment to practices in the health services, to the production of knowledge. Still according to the author, the main ethical issue is related precisely to the need to select priorities among the number of needs presented by individuals in a given society. This selection will be informed by different values and beliefs about distributive justice"²⁵, and, as far as these methodological questions are concerned, this area presents peculiarities, such as the ones shown below: Because they are preferably based on observational methods, epidemiological researches are much less subject to situations in which the limits between human and non-humane aspects can be overcome. A considerable amount of epidemiological investigation is based on factual observation. Variable control and intervening factors occur at a rational level, by means of the manipulation of available information, without it creating actual artificial conditions to facilitate the explanation of relationships between such variables²⁵.

In a way, these notes, like so many others prepared in different fields of knowledge, point to aspects that transcend the direct relations between researcher and researched – which are also highly relevant for the constitution of a doctrinal body within ethics in health, regardless of their research methodologies. As pointed out by Rouanet, "ethics is in the origin of anthropological knowledge, both in terms of the quasi-discursive interaction between ethnologists and the other culture, and at the level of peer discourse"²⁶. Therefore, it is possible to have a code of ethics in qualitative research that, whilst obeying general norms accepted in all the international forums, is adapted to the specific characteristics of qualitative research that are broadly used in health investigations, in social representation studies, service evaluation, biographical-historical reconstitutions, institutional analysis, etc.

In sociology, ethnographic researches with participative observation pose specific ethical problems. An example, among the many that we can find in the literature, can illustrate these dilemmas. Mitchell Duneier, sociologist, reports his experience as researcher when working with a book seller, seeking to understand the survival strategies of homeless in New York. After researching for two years, with a focus on the story of one of the vendors (Hassam Hakim), whose stall was the chosen spot for people to discuss books, politics, philosophy, he asked the book seller to read the manuscript (which had been accepted for publication), and following the latter's comments that the document had been centre don him, and that reporting his case was not enough to capture the lives of the homeless, the sociologist took him to a seminar at the University of California. From that experience onwards, the sociologist and the vendor jointly presented the work The life of the street and the life of mind in black America. Duneier returned to field work and later published Sidewalk, in which, as Giddens puts it, the researcher broke with the practice, adopted by some sociologists, of hiding people's names and places depicted in the work. He imagined that revealing his subjects' real identifies would raise the responsibility standards of his research. In order to do so, the researcher made sure that each of the people depicted in the book knew the way that had been presented, and each person revised the text which, according to the sociologist, guaranteed the "integrity of the street men".

This is undoubtedly a very special way of putting ethics in research into practice, respecting the interviewee and granting them participation in the final product. We can conclude that this type of research does not aim at testing hypothesis; even if the investigation design had been put forth by the investigator, it can still undergo changes throughout its completion process.

From the standpoints and relations analyzed in this text, we have established some points that we consider basic for ethics in qualitative research:

1. subject and object are seen as undeniably bracketed together socio-historical constructions

2. in knowledge construction, the individual is self-constituted

3. culture is the universal means of individual experience expressed by means of language

4. knowledge content is the reality of the cognoscenti individual

5. the researcher interacts with their subject/object and with their personal content – since they cannot be dissociated, they must be supported by methodologies that allow for the establishment of relationships of meaning.

6. the principles of autonomy, beneficence, nonmaleficence and justice are inherent to any investigation, thus applicable to social/human researches.

7. the need for reciprocity between researcher and researched/individual/community is essential in researches run in the social/humanistic sciences, which is to say that we need to "treat our interlocutors as rational beings, capable of reasoning, and the best way to honor their human dignity is to include them in the argumentative sphere"²⁶.

We suggest:

1. broadening the ethical discussion on qualitative research in national and international forums, especially in Conferences within the areas of Social and Humanistic Sciences, in general, and in conferences which have the theme of discussing health

2. returning findings to the community, in written form: informative bulletins, posters, and in written form: meetings, debates

3. vigilance in qualitative research planning, considering that ethics is part of the investigation, and be careful with obtaining confidential information

4. care with reactions to problems raised during data collection, and sensibility to know how to follow-up on problems.

Final considerations

The whole text was conceived with the concern of calling the attention to the uniqueness of qualitative research – which crosses the areas of social and humanistic sciences and allows them the possibility of describing, decoding, interpreting and understanding the sense (or senses) attributed to phenomena within the social world.

The concern which is inherent to qualitative research is that of dealing with information that brings meaning to the processes studied. This does not mean that there is non-critical adhesion to the information obtained, but, as Jones'²⁷ puts it:I know that I cannot be totally empathetic to the research participants. I am also aware that in some moments I will situate my reading of their 'concrete' concepts – those that are used to organize, interpret and construct their world – in my macro-reference which is different from the ones they posses. However, I will try to shed light on why I do this, and to assure that this second level of meanings is bound to the elaborations presented by those interviewed.

As we could see, technical and theoretical aspects of research are important; but there are also the ethical aspects added to them. In this sense, the words of Bourdieu, in his impressive work called La misere du mondo, are more than sufficient to call our attention to the protection of those that have trusted us with their personal stories: Not to condemn, not laugh, not hate, but understand. It would be to no avail if the sociologist made his the Spinozian precept and yet were unable to also supply means by which to respect it. Or, how to supply means by which to understand, i.e., to take people as they are, if not to offer them the necessary instruments to take them on as necessary, because they are needed, methodically relating them to the causes and to the reasons they have to be they way they are? ²⁸ And, just between us, if we want a finished example of research that, in its narrative, completes the theoretical and ethical dimensions, all we need to do is read and try to follow Cecília Minayo's steps in "De ferro e flexíveis"²⁹.

Artigo apresentado em 07/05/2007

Aprovado em 13/08/2007

Versão final apresentada em 24/10/2007

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• ¹⁹
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• ²⁰
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• ²¹
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Publication Dates

• Publication in this collection
  11 Feb 2008
• Date of issue
  Apr 2008

History

• Accepted
  24 Oct 2007
• Reviewed
  13 Aug 2007
• Received
  07 May 2007