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Ethical Considerations

From the beginning, scientists involved in the Human Genome Project understood that genome information could raise serious ethical questions. For example, could genetic data be used to discriminate against people at work or in health insurance? Should genetic testing be allowed for unborn children?

To address these concerns, the HGP created the ELSI program (Ethical, Legal, and Social Implications) and dedicated about 5% of the project’s total budget to ethical research. This was one of the first large scientific projects to include ethics as a core component of its work (Green & Guyer, 2015).