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Along with identifying all of the approximately 20,000–25,000 genes in the human genome (estimated at between 80,000 and 140,000 at the start of the project), the Human Genome Project also sought to address the ethical, legal, and social issues that were created by the onset of the project. [85]
ELSI was conceived in 1988 when James Watson, at the press conference announcing his appointment as director of the Human Genome Project (HGP), suddenly and somewhat unexpectedly declared that the ethical and social implications of genomics warranted a special effort and should be directly funded by the National Institutes of Health. [1]
The Ethical, Legal, and Social Implications of Human Genetics Research (ELSI) program [3] was developed in 1990 and funded by the agencies which funded the human genome project to look into the ethical, legal and social implications which will arise after the completion of human genome project and large scale availability of the genetic information. [4]
The Centre of Genomics and Policy (previously the HumGen team) is affiliated with McGill University and the Genome Innovation Centre Canada.The Centre was launched to respond to the urgent need for informed public policy and analyses on socio-ethical issues related to human genetics research at the international, national, and provincial levels.
Three to five percent of the funding available for the Human Genome Project was set aside to study the many social, ethical, and legal implications that will result from the better understanding of human heredity the rapid expansion of genetic risk assessment by genetic testing which would be facilitated by this project. [72]
The Human Genome Organisation (HUGO) is a non-profit organization founded in 1988. HUGO represents an international coordinating scientific body in response to initiatives such as the Human Genome Project. HUGO has four active committees, including the HUGO Gene Nomenclature Committee (HGNC), and the HUGO Committee on Ethics, Law and Society ...
The project conducted research with consumers, [60] health professionals, [61] [62] genetic researchers and financial services personnel. It also conducted a policy analysis of the moratorium compared with the recommendations made by the Parliamentary Committee in 2018, finding that the moratorium did not meet the expectations of the ...
Article 11 of UNESCO's Universal Declaration on the Human Genome and Human Rights asserts that the reproductive cloning of human beings is contrary to human dignity, [10] that a potential life represented by the embryo is destroyed when embryonic cells are used, [11] and there is a significant likelihood that cloned individuals would be ...