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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 unique status of genetic information and inherited disease has a number of ramifications with regard to ethical, legal, and societal concerns. On 19 March 2015, scientists urged a worldwide ban on clinical use of methods, particularly the use of CRISPR and zinc finger, to edit the human genome in a way that can be inherited.
The ethical issues concerning gene doping have been present long before its discovery. Although gene doping is relatively new, the concept of genetic enhancement of any kind has always been subject to ethical concerns. Even when used in a therapeutic manner, gene therapy poses many risks due to its unpredictability among other reasons.
[58] [59] The project was designed to evaluate the effectiveness of the moratorium in addressing genetic discrimination in Australia, from various stakeholder perspectives. The project conducted research with consumers, [60] health professionals, [61] [62] genetic researchers and financial services
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]
This project could be thought of as an example of 'metagenomics', the analysis of a community's genome, [14] but for a human rather than a microbial community. This project is intended to promote international data sharing and collaboration, in addition to creating a standard and framework for the collection of this data.