A Trust-Based Pact in Research Biobanks. From Theory to Practice.

Traditional Informed Consent is becoming increasingly inadequate, especially in the context of research biobanks. How much information is needed by patients for their consent to be truly informed? How does the quality of the information they receive match up to the quality of the information they ought to receive? How can information be conveyed fairly about future, non-predictable lines of research? To circumvent these difficulties, some scholars have proposed that current consent guidelines should be reassessed, with trust being used as a guiding principle instead of information. Here, we analyse one of these proposals, based on a Participation Pact, which is already being offered to patients at the Istituto Europeo di Oncologia, a comprehensive cancer hospital in Milan, Italy.

Research with Aboriginal peoples: authentic relationships as a precursor to ethical research.

Recent ethics guidelines and policies are changing the way health research is understood, governed, and practiced among Aboriginal communities in Canada. This provides a unique opportunity to examine the meanings and uses of such guidelines by Aboriginal communities themselves. This qualitative study, conducted in Labrador, Canada, with the Innu, Inuit, and Inuit-Metis, examined how communities and researchers collaborate in a co-learning environment whereby mutual interests and agendas are discussed and enacted throughout the entire research process-a process referred to an authentic research relationship. The purpose of this study was to answer the following questions: (1) Why are authentic research relationships important? (2) What is authenticity in research? (3) How do we achieve authenticity in research with Aboriginal peoples? This shift to more wholistic methodologies can be used in various contexts in Canada and internationally. This is the first study by an Aboriginal person to examine the perspectives of Aboriginal people, in an Aboriginal context, using Aboriginal methodologies.

Committees for Ethics in Research involving human subjects.

In Brazil since October 1996 there have been guidelines for research involving human subjects. Now human subjects know when their treatment is part of research. Deceit is no longer tolerated. But is not enough to say we offer an explanation to the potential subject and we offer a choice before he or she is confronted with an informed consent form. As in all professional activity, scientific investigation needs social controls. In Brazil, the ultimate responsibility of an investigation lies on the investigator, but in every institution where research is carried out there is a Committee for Ethics in Research. All Committees are subordinated to the National Commission of Ethics in Research, which is submitted to the Brazilian Institute of Health. During 2005 around 17,000 protocols involving 700,000 human subjects were revised by 475 Committees distributed all over the country. Approximately 7,000 people are now working in these Committees.

Using puppetry to elicit children's talk for research.

Although puppets have been employed by various disciplines in clinical and community (e.g. homes and schools) environments, little has been written about their use as a communication tool in research. In this article, a critical review of the literature is undertaken integrating the use of puppets in a qualitative research study exploring children's perspectives on and responses to a camp for children with cancer. Methodological considerations and ethical issues of using puppets as a data collection technique are discussed. Although some limitations exist, using puppets in interviews with children appear to help them to identify, clarify and verbalize their feelings.

Reflections on the researcher-participant relationship and the ethics of dialogue.

Research concerned with human beings is always an interference of some kind, thus posing ethical dilemmas that need justification of procedures and methodologies. It is especially true in social work when facing mostly sensitive populations and sensitive issues. In the process of conducting a research on the emotional life histories of Israeli men who batter their partners, some serious ethical questions were evoked such as (a) Did the participants really give their consent? (b) What are the limits of the researcher-participants relationship and who decides them? (c) For whom is the study beneficial? and (d) To what degree did the methodology fit with the participants? In this article, I discuss the Socratic idea of truth revealed through dialogue and the idea of reciprocity that was developed in Buber's (1949) ethics of dialogue and Habermas' (1990) communicative ethics. The 3 essential conclusions drawn from the ethical questions raised and the discussion of the thinkers that are mentioned previously are (a) dialogical methodology is ethically justified; (b) dynamic interactions give a more holistic perspective of the human nature, thus enriching the field; and (c) through dialogical methodology both researcher and participant profit from growth of knowledge, which is a key for empowerment and change.

The problem of privacy in transcultural research: reflections on an ethnographic study in Sri Lanka.

Western laws and codes of ethics frequently require that private health information be treated confidentially. However, cross-cultural research shows that it is not always easy to determine what members of a culture consider to be private or how they wish private information to be handled. This article begins by presenting an ethnographic study of patient-healer relationships in Sri Lanka; researchers were surprised to find that participants' views of health and privacy differed greatly from typical Western views, and that the privacy protections they had put in place caused discomfort among participants. Building on this ethics case study, the article explores two main questions. First, can a single definition of privacy possibly do justice to the cultural variations that exist, or does a conceptual definition inevitably run the risk of ethnocentrism? Second, to what extent is strict compliance with research regulations or ethics codes ethically justifiable when following the rules will obviously cause unease in international participants?