What were some of the ethical, legal, and social implications addressed by the Human Genome Project? The mission of the ELSI program was to identify and address issues raised by genomic research that would affect individuals, families, and society. The ELSI program focused on the possible consequences of genomic research in four main areas: Privacy and fairness in the use of genetic information, including the potential for genetic discrimination in employment and insurance. The integration of new genetic technologies, such as genetic testing, into the practice of clinical medicine. Ethical issues surrounding the design and conduct of genetic research with people, including the process of informed consent. The education of healthcare professionals, policy makers, students, and the public about genetics and the complex issues that result from genomic research.
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The content of this page is as it was at the close of the project with the exception of minor repairs such as the removal of broken links. The U. Fairness in the use of genetic information by insurers, employers, courts, schools, adoption agencies, and the military, among others. Who should have access to personal genetic information, and how will it be used?
Privacy and confidentiality of genetic information. Who owns and controls genetic information? How does genomic information affect members of minority communities? Reproductive issues including adequate informed consent for complex and potentially controversial procedures, use of genetic information in reproductive decision making, and reproductive rights.
Do healthcare personnel properly counsel parents about the risks and limitations of genetic technology? How reliable and useful is fetal genetic testing? What are the larger societal issues raised by new reproductive technologies? Clinical issues including the education of doctors and other health service providers, patients, and the general public in genetic capabilities, scientific limitations, and social risks; and implementation of standards and quality-control measures in testing procedures.
How will genetic tests be evaluated and regulated for accuracy, reliability, and utility? Currently, there is little regulation at the federal level. How do we prepare healthcare professionals for the new genetics? How do we prepare the public to make informed choices? How do we as a society balance current scientific limitations and social risk with long-term benefits?
Uncertainties associated with gene tests for susceptibilities and complex conditions e. Should testing be performed when no treatment is available? Should parents have the right to have their minor children tested for adult-onset diseases?
Are genetic tests reliable and interpretable by the medical community? Conceptual and philosophical implications regarding human responsibility, free will vs genetic determinism, and concepts of health and disease. Can people always control their behavior? What is considered acceptable diversity? Where is the line between medical treatment and enhancement? Health and environmental issues concerning genetically modified foods GM and microbes. Are GM foods and other products safe to humans and the environment?
Commercialization of products including property rights patents, copyrights, and trade secrets and accessibility of data and materials. Who owns genes and other pieces of DNA? Will patenting DNA sequences limit their accessibility and development into useful products? Primary goals were to discover the complete set of human genes and make them accessible for further biological study, and determine the complete sequence of DNA bases in the human genome.
See Timeline for more HGP history. Published from until , this newsletter facilitated HGP communication, helped prevent duplication of research effort, and informed persons interested in genome research. Citation and Credit Unless otherwise noted, publications and webpages on this site were created for the U.
Department of Energy program and are in the public domain. Permission to use these documents is not needed, but credit the U. Materials provided by third parties are identified as such and not available for free use.
ARCHIVE: Ethical, Legal, and Social Issues
Learn how and when to remove this template message The process of identifying the boundaries between genes and other features in a raw DNA sequence is called genome annotation and is in the domain of bioinformatics. While expert biologists make the best annotators, their work proceeds slowly, and computer programs are increasingly used to meet the high-throughput demands of genome sequencing projects. Beginning in , a new technology known as RNA-seq was introduced that allowed scientists to directly sequence the messenger RNA in cells. This replaced previous methods of annotation, which relied on the inherent properties of the DNA sequence, with direct measurement, which was much more accurate. Today, annotation of the human genome and other genomes relies primarily on deep sequencing of the transcripts in every human tissue using RNA-seq. It is the combined mosaic of a small number of anonymous donors, all of the European origin. The HGP genome is a scaffold for future work in identifying differences among individuals.
The Human Genome Project