DO FAIR AND JUST SYSTEMS REQUIRE COMPENSATION
FOR THE DISADVANTAGES OF THE NATURAL LOTTERY?
A DISCUSSION ON SOCIETY’S DUTIES ON THE
PROVISION OF GENE THERAPY Ekmekci PE1,*, Güner MD2 *Corresponding Author: Perihan E. Ekmekci, M.D., Ph.D., Department of History of Medicine and Ethics,
TOBB Economics and Technology University Medical School, Sogutozu Cad. No: 43, 06560 Ankara, Turkey.
Tel: +90-532-262-0350. Fax: +90-312-292-4432. E-mail: p.ekmekci@etu.edu.tr; drpelifek@gmail.com page: 69 download article in pdf format
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Abstract
Genetic diseases have been thought to be acquired
as a result of sheer bad luck. However, recent advances
in medical science have demonstrated the mechanisms
of genetic disorders, which enable us to intervene with
their occurrence and treatment. Today, gene therapy, once
considered too risky, has become safer and can save the
lives of patients with previously untreatable and lethal
genetic diseases. However, the positive expectations from
gene therapy are overshadowed by their extremely high
prices. Thus, the duty of society in the provision of gene
therapies has been frequently discussed. The discussions
mainly focus on how to meet the genetic treatment needs of
patients without violating the notion of justice and fairness
in society. This study discusses the theoretical grounds for
society’s duty to compensate for genetic disease patients’
disadvantages by providing them with appropriate genetic
treatment. The main question is whether a fair and just
system requires society to provide available lifesaving
gene therapy to patients in need. The discussion is constructed
on the crucial notion of the fair equal opportunity
principle in a just system and the plausibility of including
disadvantages emerging from bad luck in the natural lottery
in the domain of justice.
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