Recruiting Terminally Ill Patients into Non-Therapeutic Oncology Studies: views of Health Professionals [Book Review]
David Bourget (Western Ontario)
David Chalmers (ANU, NYU)
Rafael De Clercq
Ezio Di Nucci
Jack Alan Reynolds
Learn more about PhilPapers
BMC Medical Ethics 13 (1):33- (2012)
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
|Keywords||Non-therapeutic Health professional Bioethics Consent Interview Terminally ill|
|Categories||categorize this paper)|
Setup an account with your affiliations in order to access resources via your University's proxy server
Configure custom proxy (use this if your affiliation does not provide a proxy)
|Through your library|
References found in this work BETA
John Hardwig (1990). What About the Family? Hastings Center Report 20 (2):5-10.
M. Kottow (2010). Ethical Quandaries Posing as Conflicts of Interest. Journal of Medical Ethics 36 (6):328-332.
James Lindemann Nelson (1992). Taking Families Seriously. Hastings Center Report 22 (4):6-12.
A. M. Jubb (2002). Palliative Care Research: Trading Ethics for an Evidence Base. Journal of Medical Ethics 28 (6):342-346.
Citations of this work BETA
No citations found.
Similar books and articles
Sami Alsolamy (2014). Islamic Views on Artificial Nutrition and Hydration in Terminally Ill Patients. Bioethics 28 (2):96-99.
Derek R. Bell (2003). Rawls and Research on Cognitively Impaired Patients: A Reply to Maio. Theoretical Medicine and Bioethics 24 (5):381-393.
Udo Schüklenk & Christopher Lowry (2009). Terminal Illness and Access to Phase 1 Experimental Agents, Surgeries and Devices: Reviewing the Ethical Arguments. British Medical Bulletin 89 (1):7-22.
Marwan Habiba & Martyn Evans (2002). The Inter-Role Confidentiality Conflict in Recruitment for Clinical Research. Journal of Medicine and Philosophy 27 (5):565 – 587.
Jeff Blackmer (2003). The Unique Ethical Challenges of Conducting Research in the Rehabilitation Medicine Population. BMC Medical Ethics 4 (1):1-6.
Kay Norton (2011). How Music-Inspired Weeping Can Help Terminally Ill Patients. Journal of Medical Humanities 32 (3):231-243.
Joachim Widder (2004). The Origins of Medical Evidence: Communication and Experimentation. Medicine, Health Care and Philosophy 7 (1):99-104.
Eve Garrard & Anthony Wrigley (2009). Hope and Terminal Illness: False Hope Versus Absolute Hope. Clinical Ethics 4 (1):38-43.
Debra S. Borys (1994). Maintaining Therapeutic Boundaries: The Motive is Therapeutic Effectiveness, Not Defensive Practice. Ethics and Behavior 4 (3):267 – 273.
Jennifer A. Parks (1998). A Contextualized Approach to Patient Autonomy Within the Therapeutic Relationship. Journal of Medical Humanities 19 (4):299-311.
Eugene J. Stein (1980). Doctors and Patients: Partners or Adversaries? [REVIEW] Bioethics Quarterly 2 (2):118-122.
John Appiah-Poku, Sam Newton & Nancy Kass (2011). Participants' Perceptions of Research Benefits in an African Genetic Epidemiology Study. Developing World Bioethics 11 (3):128-135.
Linus Johnsson, Gert Helgesson, Mats G. Hansson & Stefan Eriksson (2013). Adequate Trust Avails, Mistaken Trust Matters: On the Moral Responsibility of Doctors as Proxies for Patients' Trust in Biobank Research. Bioethics 27 (9):485-492.
Martin Lakin (1988). Ethical Issues in the Psychotherapies. Oxford University Press.
Franklin G. Miller & Steven Joffe (2006). Evaluating the Therapeutic Misconception. Kennedy Institute of Ethics Journal 16 (4):353-366.
Added to index2012-12-06
Total downloads31 ( #127,190 of 1,796,218 )
Recent downloads (6 months)10 ( #74,619 of 1,796,218 )
How can I increase my downloads?