Ethics, policy, and rare genetic disorders: the case of Gaucher disease in Israel
Gross, Michael L.
Theoretical Medicine and Bioethics 2002; 23(2): 151-170
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.
Abortion; Carriers; Decision Making; Disclosure; Disease; Ethics; Gaucher Disease; Genetic Disorders; Genetic Information; Jews; Patients; Privacy; Risk; Philosophical Ethics; Confidentiality; Allocation of Health Care Resources; Abortion; Genetics, Molecular Biology and Microbiology; Genetic Screening / Genetic Testing; Economics of Health Care;
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GENETIC DISORDERS SOURCEBOOK: BASIC CONSUMER HEALTH INFORMATION ABOUT HEREDITARY DISORDERS, INCLUDING DISORDERS RESULTING FROM ABNORMALITIES IN SPECIFIC GENES, SUCH AS HEMOPHILIA, SICKLE CELL DISEASE, AND CYSTIC FIBROSIS, CHROMOSOMAL DISORDERS, SUCH AS DOWN SYNDROME, FRAGILE X SYNDROME, AND KLINEFELTER SYNDROME, AND COMPLEX DISORDERS WITH ENVIRONMENTAL AND GENETIC COMPONENTS, SUCH AS ALZHEIMER DISEASE, CANCER, HEART DISEASE, AND OBESITY, ALONG WITH INFORMATION ABOUT THE HUMAN GENOME PROJECT, GENETIC TESTING AND PRIVACY CONCERNS, THE SPECIAL NEEDS OF CHILDREN WITH GENETIC DISORDERS, CURRENT RESEARCH INITIATIVES, A GLOSSARY OF TERMS, AND A DIRECTORY OF RESOURCES FOR FURTHER HELP AND INFORMATION Judd, Sandra J., ed. (2010)