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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 Human Genome Project was a 13-year-long publicly funded project initiated in 1990 with the objective of determining the DNA sequence of the entire euchromatic human genome within 13 years. [ 8 ] [ 9 ] The idea of such a project originated in the work of Ronald A. Fisher , whose work is also credited with later initiating the project. [ 10 ]
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]
One current example of this ethical controversy was demonstrated in the 2018 announcement of 23andMe's partnership with the pharmaceutical company GlaxoSmithKline. In this deal, GlaxoSmithKline purchased a $300 million stake in 23andMe and in return 23andMe would allow the pharmaceutical company access to its biobank of genomic data for their ...
Examples of this would be the topic of equality in medicine, the intersection of cultural practices and medical care, ethical distribution of healthcare resources in pandemics, [citation needed] [19] and issues of bioterrorism. [20] Medical ethical concerns frequently touch on matters of life and death.
The American Society of Human Genetics had declared in 2017 that the basic research on in vitro human genome editing on embryos and gametes should be promoted but that "At this time, given the nature and number of unanswered scientific, ethical, and policy questions, it is inappropriate to perform germline gene editing that culminates in human ...
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]
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 ...