The Human Genome Project By: Colleen Crowley The Main Issues What is the Human Genome Project The Controversy The Benefits Recommendations What is the Human Genome Project? Started in 1990 – research began in 1972 4 billion dollar program International effort – Department of Energy – National Institute of Health – Universities – Laboratories Predicted to finish in 2003 The Goals of the Project Identify all the 100,000 genes in human DNA Determine the sequence of the 3 billion chemical base pairs that make up human DNA Store information in databases Develop tools for data analysis Transfer related technology to the private sector Address ethical, legal, and social issues Why? Better understand diseases Learn how the body works Preventive strategies for medicine Progress Half the genome has been mapped • 3.1 billion bases of DNA total • 100,000 human genes Finish in 2003 • due to technological advances Definitions Human Genome: – the sum of human genetic material DNA – carries the genetic info in cells Chromosomes – a strand of DNA that carries genes The Controversy Concerns • bio-ethical • political • moral Insurance companies Medical professionals Source: DOE Human Genome Program, http://www.ornl.gov Fairness and Privacy Who should have access to one’s genetic information? How should it be used? Who owns and controls it? Consider these would be owners: – insurers, employers, courts, schools, military, adoption agencies Insurance Company If a higher risk of genetic disease… – Disclose • deny coverage • pay higher premiums • affect family members – Do not disclose • increase costs for insurance company Example: Tests used for risk classification now: – Nicotine tests – PSA markers for prostate cancer Is it different for… Huntington Disease – Disclosure of info affects family also – Denial of coverage until age 50 RESULTS IN... Genetic Discrimination – discrimination against otherwise a healthy individual on the basis of a genetic abnormality Creating a Genetic Underclass – genetically inclined to certain diseases that could stereotype races, cultures, or families Benefits 500 genetic tests – study families in clinics – predisposition to diseases – difference between healthy and ill 50 tests performed in clinics More Benefits Finds the misspellings in sequences of DNA – Which identifies genes • Breast cancer • Parkinson Disease • Kidney Disease • Deafness Rational drug design Better organ replacement Advancement Reduce costs for research – $2 to $0.10 for a bit of DNA research Technology advances – DNA Probe Test • finds DNA that causes disease – Chlamydia, Tuberculosis Regulation Health Insurance Portability and Accountability Act – 1996 – forbids denial of coverage based on genetic information Recommendations Prohibit Insurance Companies – using genetic info for risk classification – denial of coverage Educate – prevent genetic discrimination – a blueprint of how we work – about individual and family background Laws and Regulations OVERVIEW Controversy » who should have access » ethical, legal, social concerns Benefits » preventive medicine » tests for diseases Recommendations » Laws and regulations » education REMEMBER DO YOU WANT SOMEONE TO KNOW YOUR GENETIC BLUE PRINT OF HOW YOU WORK?
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