"Future research should examine non-financial forms of participation in clinical research by DAOs, especially the role of patient-centered organizations in subject recruitment and data collection. Although expanded participation in clinical research is generally of much benefit to both researchers and patients, more active DAO involvement may introduce new challenges with regard to research protections that should be more fully examined [Landy and Sharp, 2010; Simon and Mosavel, 2010]. Future research should seek to characterize the many roles that DAOs are playing in clinical research, their impact on patients' perceptions of the potential benefits and risks of research participation, and identify best practices for ensuring adequate protection of research volunteers. "
[Show abstract][Hide abstract] ABSTRACT: Anecdotal reports suggest that disease-advocacy groups (DAOs) participate in multiple aspects of clinical research. No systemic analysis of the extent of DAO involvement in clinical genetics research has been conducted to date. We conducted a systematic review of journal articles published in 2004 and 2005 reporting clinical research on 50 genetic diseases to assess the extent to which DAOs financed the studies reported, assisted in subject recruitment, or participated in other aspects of research. Of 513 articles, 350 (68%) included a statement regarding research support. Of these articles, 114 (33%) acknowledged DAO funding. The proportion of articles reporting financial support from a DAO varied greatly by disease. Articles reporting financial support from a DAO often identified at least one additional source of support (73%). Of the articles examined, 19 (4%) acknowledged DAO assistance with subject recruitment and 11 (2%) included an author affiliated with a DAO. DAOs provide financial support for numerous clinical research studies in genetics, often in partnership with government agencies and for-profit corporations. DAOs also participate in other aspects of clinical research, including subject recruitment. Future studies should seek to characterize these research partnerships more fully.
American Journal of Medical Genetics Part A 12/2010; 152A(12):3051-6. DOI:10.1002/ajmg.a.33767 · 2.05 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: To consider and summarize provocative and important publications from 2009 and 2010 related to the ethics of international substance use disorder research.
This review highlights publications related to the interconnected areas of responsible conduct of research, human participant protections and the increasingly important area of community concerns in research, all within the larger realm of ethical concerns. Ongoing concerns highlighted include standards for conflict of interest, recruitment and remuneration practices. Other literature discussed expands the ethical dialogue to consider the community perspective on research, stigmatization of drug users from research and the absence of the 'moral voice' of drug users in ethical decision-making.
Ethical dilemmas are inherent in the pursuit of any research; in substance use disorder research, often situated in a community with at-risk populations, questions such as who sets the research agenda and what norms are followed are critically important. Responsible research that protects participants and their communities internationally requires ongoing vigilance.
Current opinion in psychiatry 03/2011; 24(3):186-90. DOI:10.1097/YCO.0b013e328345926a · 3.55 Impact Factor
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