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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]
Emerging technology such as direct-to-consumer genetic tests have allowed for broad genetic health information to be more accessible to the public but raises concerns about privacy. In addition, the COVID-19 pandemic has exacerbated difficulties of those with genetic conditions as they have faced discrimination within the U.S. healthcare system.
March 2001 – National Human Genome Research Institute (NHGRI) and Human Genome Project (HGP)-funded scientists find a new tumor suppressor gene involved in breast, prostate and other cancers on human chromosome 7. A single post-doc, using the "working draft" sequence data, is able to pin down the gene within weeks; before, the same work took ...
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.
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.
The other ethical concern is the potential for “designer babies”, or the creation of humans with "perfect", or "desirable" traits. There is a debate as to if this is morally acceptable as well. Such debate ranges from the ethical obligation to use safe and efficient technology to prevent disease to seeing some actual benefit in genetic ...