Ethical issues in funding orphan drug research and development.
This essay outlines the moral dilemma of funding orphan drug research and development. To date, ethical aspects of priority setting for research funding have not been an issue of discussion in the bioethics debate. Conflicting moral obligations of beneficence and distributive justice appear to demand very different levels of funding for orphan drug research. The two types of orphan disease, rare diseases and tropical diseases, however, present very different ethical challenges to questions about allocation of research funds. The dilemma is analysed considering utilitarian and rights based theories of justice and moral obligations of non-abandonment and a professional obligation to advance medical science. The limitations of standard economic evaluation tools and other priority setting tools used to inform health policy decision makers on research funding decisions are outlined.
Gericke
C A
CA
Department of Health Care Management, Technische Universität Berlin, Strasse des 17. Juni 145, D-10623 Berlin. christian.gericke@tu-berlin.de
Riesberg
A
A
Busse
R
R
D004341:Drug Evaluation / Q000191:economics*; D004994:Ethics, Pharmacy; D006801:Humans; D009014:Morals; D009965:Orphan Drug Production; D010601:Pharmacology, Clinical / Q000191:economics / Q000941:ethics*; D012106:Research; D012109:Research Support as Topic / Q000941:ethics*
J Med Ethics. 2000 Oct;26(5):323-9
11055033
Health Technol Assess. 2001;5(3):1-138
11207451
Rev Epidemiol Sante Publique. 2001 Sep;49(4):387-96
11567205
Philos Public Aff. 1997 Fall;26(4):303-50
11660435
Nature. 2003 May 15;423(6937):343-8
12748653
BMJ. 2000 Sep 30;321(7264):824-6
11009528
BMJ. 1994 Jul 16;309(6948):184-8
8044100
Health Care Manage Rev. 1998 Fall;23(4):43-53
9803318
Bull World Health Organ. 1998;76 Suppl 2:147-9
10063699
J Med Ethics. 1999 Jun;25(3):224-9
10390676
J Health Econ. 1991 Jul;10(2):107-42
10113009