Genetics and ELSI Report Series
The Human Genetics Programme is producing a series of reports on the four identified ELSI priority areas: Genetics Patents, Genetic Testing and Screening, Pharmacogenetics and Genetic Databanks.
Genetics, genomics and the patenting of DNA (2005)
Medical Genetic Services in Developing Countries: The Ethical, Legal and Social Implications of Genetic Testing and Screening
(to be published in September 2006)
This publication considers the primary ethical, legal, and social issues associated with the establishment of medical genetic services in developing countries, in particular genetic testing and screening. The goal of this report is to expand and enrich the discussion of some of the major ELSI specific to medical genetic services in developing countries, and to suggest principles of effective management of the ELSI of genetic testing and screening in these contexts.
While some of the issues and challenges raised by genetic testing and screening arise globally, there are other concerns that are specific or more prevalent in developing countries. For example, discrimination and stigmatization can present informal barriers to healthcare access worldwide. Many international and national reports on genetic testing and screening have focused extensively on the potential for discrimination in relation to health insurance and employment. While this is also a concern in developing countries, an additional concern about stigmatization relates to the discrimination of female carriers in marriage, particularly in communities with a high prevalence of autosomal recessive genetic diseases and a cultural preference for arranged marriage. Other issues are equally relevant to developed and developing countries but have a greater impact in developing countries. For example, the concerns around commercial genetic testing are more acute in environments with lower levels of public testing facilities and limited, or no, regulatory structures in place to protect patient safety and provide quality assurance. Such environments are more prevalent in developing, low-income, countries.
The report will focus on seven major ethical, social, and legal issues that apply to the introduction of medical genetic services. These are: distributive justice; the social context in developing countries as it specifically relates to testing and screening, including consanguineous and endogamous marriage, religion, views on gender, and views and policies on abortion; stigmatization and discrimination; protection of privacy and confidentiality; the provision of genetic counselling; genetics education; and ensuring patient safety.
The Ethical, Legal and Social Implications of Pharmacogenomics in Developing Countries
(to be published in October 2006)
This publication considers the ethical, legal, and social issues (ELSI) associated with research and development of pharmacogenomic tests and treatment in developing countries. As pharmacogenomics is a newly emerging field, the aim of this report is to consider some of the main ELSI that will be important in the development of the field in order to provide a starting point for further discussion. The report also makes recommendations for the effective and ethical pursuit of pharmacogenomic research and implementation.