Ethics, policy, and rare genetic disorders: The case of Gaucher disease in Israel

Research output: Contribution to journalReview articlepeer-review

Abstract

Gaucher disease is a rare, chronic, ethnic-specific genetic disorder affecting Jews of Eastern European descent. It is extremely expensive to treat and presents difficult dilemmas for officials and patients in Israel where many patients live. First, high-cost, high-benefit, but low volume treatment for Gaucher creates severe allocation dilemmas for policy makers. Allocation policies driven by cost effectiveness, age, opportunity or need make it difficult to justify funding. Process oriented decision making based on terms of fair cooperation or decisions invoking the "rule of rescue" risk discriminating against minorities who may already suffer from inequitable distribution of heath care resources. Apart from cost, Gaucher disease prompts questions about abortion. Unlike severe genetic disorders, Gaucher offers no grounds for abortion and, in many ways, is analogous to gender based abortions that are prohibited regardless of fetal age. Finally, Gaucher raises concerns about the disclosure of genetic information. These affect potential carriers asked to participate in population studies and carriers and patients who must consider disclosure to others. These concerns weigh the right to privacy against communal interests and bilateral commitments.

Original languageEnglish
Pages (from-to)151-170
Number of pages20
JournalTheoretical Medicine and Bioethics
Volume23
Issue number2
DOIs
StatePublished - 2002

Keywords

  • Abortion
  • Bioethics
  • Disclosure
  • Gaucher disease
  • Genetic screening
  • Israel
  • Resource allocation
  • Rule of rescue

ASJC Scopus subject areas

  • Issues, ethics and legal aspects

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