Ethical concerns in treating rare diseases with expensive therapy

Deborah Elstein, Avraham Steinberg

Research output: Chapter in Book/Report/Conference proceedingChapterpeer-review


Health care professionals are united in concern for their patients’ welfare and are committed to certain ethical norms that reflect both the unique relationship of the care giver to the patient as well as that of man to his/her fellow man. Above all, there are the values of the sacredness of and respect for human life and the personal and professional integrity of the health care provider. The sacredness of life has been defined as respect for human life that should be assisted insofar as is feasible and consistent with the ethical values enumerated below. Yet, there is less ethical value in prolonging life by virtue of respect for life if this produces a significant lack of quality of life. Prolongation of life is not always equivalent to the best interests of the patient (if known) under all ethical situations, and may indeed occasionally be in conflict with the moral right of respect for and dignity of life. Of equal importance is appreciation of the role of the doctor as a care giver with the expectation that he/she respects the commonly held ethical norms and can be expected to uphold them when choosing therapeutic alternatives and administering potentially harmful procedures. Thus, there are no simple solutions to these complicated and often intersecting values. Therefore, many societies and religions have created mechanisms that apply, often in a dispassionate way, to what inevitably will be called “tragic choices” since, in the ultimate analysis, the subject of the discourse is a fellow human being who has no recourse but to be dependent on the decisions of others. This is especially true when never-competent patients are the subject of these tragic choices.

Original languageEnglish
Title of host publicationGaucher Disease
PublisherCRC Press
Number of pages10
ISBN (Electronic)9781420005509
ISBN (Print)9780849338168
StatePublished - 1 Jan 2006
Externally publishedYes

Bibliographical note

Publisher Copyright:
© 2007 by Taylor & Francis Group, LLC.


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