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Population-Based Large-Scale Collections of DNA samples and Databases Genetic Information

Report of the Bioethics Advisory Committee of
The Israel Academy of Sciences and Humanities on 
Population-Based Large-Scale Collections of
DNA Samples And Databases of Genetic Information

December 2002

The purposes of large-scale population-based DNA collections:
1. Understanding the function and naturally-occurring variations of human genes as these relate to their phenotypic manifestations, including various human attributes and in particular diseases that affect the human species.
2. Understanding the genetic basis of common diseases, mainly by examining families in which these diseases appear. The genes in which defects related to diseases  appear have been identified by techniques of genetic linkage and positional cloning.
3. There is a possibility today to discover the genetics of common diseases, due to the now almost completed Human Genome Project.
4. Identification of genes involved in common diseases by comparing genetic variations (polymorphisms) between healthy persons and persons affected by the disease in question.
5. For statistical comparisons to be meaningful, they must be performed on a large scale. Population-based large scale DNA collections will afford comparisons of groups of patients and controls from a common ethnic origin.
6. After genetic testing is performed on DNA samples from large numbers of people, a database is formed linking genetic to medical and other information obtained from the participants.
Ethical issues arising from large-scale genetic collections and databases:
1. The rights of individuals with respect to their DNA samples and genetic information derived from them are protected in Israel by the Genetic Information Law, 5761-2000.
2. One of the major issues is the status of the medical and personal data linked to the genetic collection.
3. Informed consent and confidentiality are crucial to the voluntary participation of any individual in medical research.
4. The size and scope of databases may raise serious confidentiality issues (e.g. forensic and judiciary investigations, emergency situations, etc.).
5. Issues related to the protection of the collectivity, namely legal and moral rights of entire social groups.
Commercialization of genetic collections and databases:
Issues pertaining to ownership of the samples and the information linked to them; the commercial and pharmacological promise of the study of common diseases; a just allocation of potential profits derived from genetic collections; balancing public and private investments.
Guidance at the national level:
Considerable organization and financial means are required for assembling large DNA collections and genetic databases. Different countries have chosen different ways: agreements between the government and one commercial company; funding by non-profit organizations, etc.
Perspective for Israel:
The Biotechnics Advisory Committee of the Israel Academy of Sciences and Humanities has delineated during 2002 the ethical issues pertaining to population based large scale genetic collections and databases in Israel, bearing in mind the unique characteristics of this country and its peoples. This task was undertaken in the light of debates at the Ministry of Health, in the Knesset and in the Israel Medical Association. A broad set of principles was defined, dealing with both public and commercial DNA collections and genetic databases. This report reflects the deliberations, and proposes detailed guidelines for the implementation of this important new field of genetic association research.
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