Health researchers may have a strategic role to play in confronting the predicament of refugee detainees because they can lend their analytic skills and authority to document the personal cost and impact of this practice. The justification for such ‘subversive’ research comes from the discrepancy between the sources of legitimacy and legality for government action. The practice of detention may be legal but illegitimate, judged against the standards of international human rights. Hence, research to explore the consequences of this policy (...) is both morally and politically legitimate. Morally, it reflects a commitment to uncover and oppose unjustified violence against others; politically, it represents an attempt to identify and challenge abuses of power by the state. However, doing research without official approval or with the use of deception raises concerns for the safety of detainees as vulnerable research subjects as well as the credibility of researchers and the research enterprise. Researchers also may face sanctions that will limit their future effectiveness. An international network of researchers working on issues of human rights and the health of asylum seekers can provide an institutional basis to support work that challenges local practices. (shrink)

Background Non-therapeutic trials in which terminally ill cancer patients are asked to undergo procedures such as biopsies or venipunctures for research purposes, have become increasingly important to learn more about how cancer cells work and to realize the full potential of clinical research. Considering that implementing non-therapeutic studies is not likely to result in direct benefits for the patient, some authors are concerned that involving patients in such research may be exploitive of vulnerable patients and should not occur at all, (...) or should be greatly restricted, while some proponents doubt whether such restrictions are appropriate. Our objective was to explore clinician-researcher attitudes and concerns when recruiting patients who are in advanced stages of cancer into non-therapeutic research. Methods We conducted a qualitative exploratory study by carrying out open-ended interviews with health professionals, including physicians, research nurses, and study coordinators. Interviews were audio-recorded and transcribed. Analysis was carried out using grounded theory. Results The analysis of the interviews unveiled three prominent themes: 1) ethical considerations; 2) patient-centered issues; 3) health professional issues. Respondents identified ethical issues surrounding autonomy, respect for persons, beneficence, non-maleficence, discrimination, and confidentiality; bringing to light that patients contribute to science because of a sense of altruism and that they want reassurance before consenting. Several patient-centered and health professional issues are having an impact on the recruitment of patients for non-therapeutic research. Facilitators were most commonly associated with patient-centered issues enhancing communication, whereas barriers in non-therapeutic research were most often professionally based, including the doctor-patient relationship, time constraints, and a lack of education and training in research. Conclusions This paper aims to contribute to debates on the overall challenges of recruiting patients to non-therapeutic research. This exploratory study identified general awareness of key ethical issues, as well as key facilitators and barriers to the recruitment of patients to non-therapeutic studies. Due to the important role played by clinicians and clinician-researchers in the recruitment of patients, it is essential to facilitate a greater understanding of the challenges faced; to promote effective communication; and to encourage educational research training programs. (shrink)