Ciencias sociales, humanas y del comportamiento: dificultades regulatorias en países latinoamericanos y su impacto en la investigación en salud

Abstract

La investigación en ciencias sociales, humanas y del comportamiento debe tener un sistema especial de regulación y clara normatividad cuando esta se interrelaciona con investigaciones en las ciencias y disciplinas de la salud. Se exponen puntos coyunturales que evidencian la situación crítica de riesgos para la dignidad, imagen, reputación, credibilidad o inocencia del sujeto en estudio, grupos o comunidades; y propone que los formuladores de políticas públicas elaboren acciones específicas para el sector, orientadas a la toma de conciencia de los miembros de Comités de Ética, de los investigadores y de financiadores, en el respeto a los derechos de los participantes en la investigación, sean éstos individuos o comunidades.Palabras clave: Investigación social, vulnerabilidad, regulación, riesgo, daño.****************************************************************************************Social, human and behavioral sciences: regulatory difficulties inLatin American countries and its impact on health researchAbstract:Research dealing with social, human and behavioral sciences should have a special regulation and a clear normativity when it interrelates with research done in the health sciences and professions. Situational aspects that make it evident how risks to an individual’s dignity, image, reputation, credibility or innocence are shown, a proposal is given to the people that formulate public policy for this specific sector, orienting them to consider a more consensus approach to the members of ethics committees, researchers and those who finance projects that might infringe the rights of the participants in the research projects, being these individuals or communities.Key words: Social research, vulnerability, infringement, regulations, risk, harm.***************************************************************************************Ciências Sociais, humanas e do comportamento: dificuldades regulatóriasnos países latino-americanos e seu impacto na pesquisa em saúdeResumoA pesquisa em ciências sociais, humanas e comportamentais deve ter um sistema especial de regulamentação e normatividade quando relacionada ao campo da saúde. No artigo são expostos pontos conjunturais que evidenciam a situação crítica de riscos para a dignidade, a imagem, a reputação, credibilidade ou inocência do sujeito ou grupo de estudo. Assim se propõe que os formuladores de políticas públicas promovam ações para favorecer a tomada de consciência dos membros de Comités de Ética, pesquisadores e financiadores, sobre a importância do respeito aos participantes da pesquisa.Palavras chave: pesquisa social, vulnerabilidade, regulamentação, risco, daño.

Harmful Effects of Social Research and the Universal Declaration on Bioethics and Human Rights

“…The application of the Declaration or CIOMS guideline to the question of reducing harm to participants is often disputed in the context of social research: it is believed that this type of research underestimates or minimises the harms, or fails to communicate them to participants (Pidgeon, Simmons, Sarre, Henwood, Smith, 2008;Sorokin et al, 2017), that it requires fewer ethical safeguards, that its harmful effects cannot be anticipated, that it causes no physical effects on participants, or that these effects are different or simply non-existent (Santi, 2015;Sorokin et al, 2017).…”

“…The difficulty in recognizing risks and harms in social research has been generated by, among other factors, the use of these terms without specific definitions and the failure to identify them during research. It is known when studies are planned that risks appear from the beginning, and that harm can emerge in the course of research or at the end, when researchers consider whether there were harmful effects and evaluate the type of harm (Santi, 2015;Sorokin et al, 2017;Aarons, 2017).…”

“…Assessing the harm resulting from research involves understanding when and under what circumstances a participant may be harmed, and the justification of restrictions on personal freedoms to prevent harm to third parties, as well as taking action against harms caused (Santi, 2015). For this reason, such assessment does not necessarily adhere to the biomedical concepts of calculation and predictability of risks (Sieber & Tolich, 2013, p. 22;Bosi, 2015;Sorokin et al, 2017).…”

“…The bioethics of research on human subjects, including social research, considers harm in the following terms: a) physical harm, which involves pain, suffering, or injury; b) psychological harm or affective , which can manifest itself in the form of depression, anxiety, guilt, or stress; c) social harm, which exposes participants to harm in their relationships with other persons and is related to private aspects of human behavior, such as stigmatization for a particular illness or behavior outside of common moral norms; d) economic harm, in the form of monetary loss or loss of employment; e) legal harm, related to problems within the justice system for acts committed in the past or present; f) environmental harm and g) cultural harm, related to community (Santi, 2015;Sorokin et al, 2017;Aarons, 2017). Harms in social sciences are related to psychological distress, social disadvantage, cultural values of a community and invasion of privacy more than to physical injury, although the latter is considered (Israel, 2015;British Sociological Association, 2017;Sorokin et al, 2017;Villaroel, 2020). That is, harms that are "major, severe, or catastrophic are not common in social research, although they are possible" (Santi, 2015, p. 18).…”

“…When researchers initiate direct contact with study participants, their mere presence in the field generates expectations or ideas that may differ from or exceed the goals of the study. When studies involve sensitive topics, such as experiences of violence, abortion, suicide, there can be emotional risks, such as possible revictimization in the reliving of a traumatic event (Pidgeon et al, 2008;Israel, 2015;Sorokin et al, 2017;Villaroel, 2020). For social scientists, risk evaluations should consider these potential impacts or harms that their studies may have on participants, with attention to subjective, ethical, moral, and cultural factors that influence individuals' decisions, and how these are employed in the situations of uncertainty, unpredictability, and intersubjectivity that are inherent in social processes.…”