Eigindlegar rannsóknir og siðferðileg álitamál

Abstract

Í þessari grein fæst ég við þrjár meginspurningar. Í fyrsta lagi: Hvernig birtast siðferðileg álitamál í eigindlegum rannsóknum? Í öðru lagi: Eru þau að einhverju leyti frábrugðin siðferðilegum álitamálum við íhlutunarrannsóknir í læknisfræði? Og í þriðja lagi: Getur núverandi regluverk í siðfræði rannsókna á Íslandi gilt um allar eigindlegar rannsóknir á fólki? Í íslenskri löggjöf er einungis gert ráð fyrir að rannsóknaráætlanir á heilbrigðissviði skuli metnar af siðanefnd áður en þeim er hrint í framkvæmd. Þær reglur sem siðanefndir vinna eftir við siðferðilegt mat slíkra áætlana hafa einkum þróast sem andsvar við þeirri áhættu sem þátttakandi getur verið útsettur fyrir í íhlutunarrannsóknum innan læknisfræði. Í greininni lýsi ég þeim siðferðilegu álitamálum sem vakna í eigindlegum rannsóknum og nefni dæmi um hvernig þau geta skorið sig frá þeim álitamálum sem glíma þarf við þegar til dæmis eru gerðar lyfjarannsóknir eða aðrar íhlutunarrannsóknir á fólki innan heilbrigðisvísinda. Með því að draga fram þann mun, sem er á þessum tveimur rannsóknaraðferðum, vakna alvarlegar efasemdir um að núverandi vinnureglur um siðfræði rannsókna á fólki geti þjónað ákveðnum tegundum eigindlegra rannsókna sem skildi.

My experience in reviewing and participating in social science research projects and being a member of various institutional review boards (IRBs) in the health sciences has alerted me to the fact that the current framework for research ethics in Iceland may not be sensitive enough to the special moral issues that arise in the social sciences. The type of research that particularly concerns me is qualitative research. I refer in this article to examples from children’s research and disability research and to methodologies like inclusive research, life history research and action research. Such research is often based on close collaboration between the researcher and the participant. I believe that the relationship that develops in these kinds of research studies may be of an ethically different kind than that which develops between a researcher and participant in, for instance, drug trials in the health sciences. In Iceland, the current ethical framework and regulations regarding research on human subjects is mainly based on the latter model of researcher/participant relationship. I therefore wonder whether there is not a real danger that the ethical issues linked with the use of qualitative methods will be overlooked or not responded to in the right manner. In this article, I address three main questions: First, what types of ethical concerns do arise in qualitative research? Second, are these ethical concerns different from ethical issues that arise in intervention studies, such as clinical trials in medicine? And third, could existing regulation in research ethics in Iceland serve adequately all types of qualitative research on human subjects? To approach these questions, I begin by outlining the historical roots and main principles in research ethics. I briefly describe the international agreements and laws which the Icelandic Bioethics committee – the only IRB in Iceland based in Icelandic law – draws on in its work. To analyze whether these regulations are likely to be helpful and sufficient when reviewing research on humans in social sciences, I look especially into the nature of the relationship between researchers and participants in different research traditions. My suggestion is that the nature of these relationships and different research aims can impact the ethical issues that may arise during the course of the research. Hence, I compare two types of methodology in research: first, medical research, e.g. pharmacological clinical trials, and second, qualitative research, and I analyze the difference of the relationships in these research traditions. I further look specifically into the primary ethical concerns and nuances of qualitative research. To do so, I concentrate on issues regarding both the balance between responsibility and duties, as well as on the aim of the research. I analyze these issues by looking especially at protection of the participant, the relationship between the researcher and the participant and the tension between social justice and the methodological validity of the research. In evaluating these issues, I refer to basic ethical values in science: autonomy and respect for the participant, welfare of participants and society as well as justice and true or valid knowledge. This gives rise to ethical questions that are in many ways different from those asked within traditional research on human subjects in medicine. My conclusion is that these questions have not been addressed properly in the current regulations governing research ethics.