Ethical Discussions on Premarital / Prenatal Diagnosis: Case Studies of the Thalassemia Prevention Programme in Iran

Abstract
The purpose of this paper is to investigate the social policy of preventive genetic medicine in Iran, by following the legalisation process of abortion law and the factors affecting the process in wider Iranian contexts. In this paper, ethical discussions of premarital / prenatal diagnosis and selective abortion in Iran will be presented, and Iranian social policy of intervention, to control genetic diseases, especially a genetic hemoglobin disorder called Thalassemia will be explored. Ethical dilemmas in the application of genetic medicine to social policy will be focused upon.
In order to examine the role of the policy for prevention of genetic diseases and selective abortion in Iran, various resources have been studied, not only academic articles, but also discussion in the Parliament and documents related to a court case, as well as ethnographic data on the living conditions of Thalassemia patients.
Firstly, discussions of prenatal diagnosis and selective abortion is overviewed from the viewpoints of ethics, disability rights activists, and public policy for lower-resources countries. As a result, it should be noted that the most important point in the discussion on prenatal diagnosis and selective abortion in Iran is the allocation of medical resources.
Secondly, the process of implementation of national the National Thalassemia Screening Programme and legalisation of ‘Therapeutic Abortion Law’ is analysed, through scrutinizing documents such as the Majlis record, government documents and related laws and regulations. Although some western academics suggest that Iranian policy of selective abortion seems to be akin to eugenic public policy, the Iranian government is careful to avoid any portrayal of the policy as ‘eugenic’.
Thirdly, in order to provide an ethnographic discussion of this issue, practices of vasectomy seen among the Thalassemia patients will be introduced. In addition the restricted environments of Thalassemia patients and the carriers are described. This is aimed at understanding certain disabling social factors for people with genetic diseases in the local contexts of Iran.