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Exploring Genomic Insights: Ethical, Legal, and Social Implications of the Human Genome Project

The Human Genome Project (HGP) has opened new avenues in genomics that require careful consideration of the ethical, legal, and social implications (ELSI). This exploration focuses on developing policies for genomic use in both medical and non-medical contexts, understanding the relationship between genomics and factors such as race and ethnicity, and the consequences of revealing genetic contributions to traits and behaviors. As genomic knowledge permeates society, discussions about public education and responsible data use are crucial to ensure that the benefits of genome sequencing are maximized while ethical boundaries are clearly defined.

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Exploring Genomic Insights: Ethical, Legal, and Social Implications of the Human Genome Project

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  1. Human Genome Project and beyond • Genomics to Society • Develop policy for use of genomics in medical and non-medical settings • Understand relationships between genomics, race, ethnicity, and consequences of this knowledge • Understand the consequences of uncovering genetic contributions to human traits and behaviors • Assess how to define the ethical boundaries for uses of genomics

  2. Ethical, Legal, Social Implications • ELSI • Definition: • http://www.lbl.gov/Education/ELSI/ELSI.html • Incorporated into original funding plan • 5% of funding at NCHGR at NIH • Details in Box 1.1 in textbook

  3. Ethical, Legal, Social Implications • Major goals relate to how use of genome knowledge will change the individual, society and their interactions: • What are the implications for individuals and society of sequencing the human genome • Stimulation of public education and discussion of these issues • Development of policy options that would ensure beneficial use of human genome project data • What issues have arisen since the HGP was finished? Which are important to you?

  4. Ethical, Legal, Social Implications • Genetic Diagnosis- for single genes • http://www.lbl.gov/Education/ELSI/ELSI.html • Example at LBL website on breast Cancer testing- examples # 1, 2, 3 • 1. Implications of participation in testing for families • 2. Implications for testing and insurance • 3. Implications for deciding how to use genetic information

  5. Information and issues surrounding application of genotyping in Personalized Medicine See http://www.pbs.org/wgbh/nova/body/public-genomes.html And interview at left of web page with Dr. Church http://www.personalgenomes.org/ http://genetests.org See also interview with Dr Tanzi. AND Q and A Response from NaviGenics

  6. Ethical, Legal, Social Implications • Discussion starters: • Individual: should we use genome sequencing as a general diagnostic tool? What are the implications? • Society: Should we permit our genetic information to be public- and who should be allowed to use it? • Agriculture-specific- should DNA samples be taken at county/state fairs to determine if same animal used before? What about clones? • Pet breeding- should we require DNA sequence analysis to decrease inbreeding in dogs?

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