3.2: The Human Genome Project

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The Human Genome Project is an internationally funded effort to map the locations of human genes and understand the role these genes play in development, health and illness (Check out recent developments at www.genome.gov). Genes are segments of chromosomes (46 strands of a chemical substance called DNA that are contained in the nucleus of each normal human cell) that vary in length. There are an estimated 25,000 to 30,000 genes on each chromosome; a number far below the estimate of 100,000‐ 150,000 held before the work of the Human Genome Project.

Understanding the role of genes in health and illness can bring about both harm and good (Weitz, 2007). A person who knows that they are at risk for developing a genetic disorder may be able to adopt lifestyle practices that minimize the risk and a person who discovers that they are not at risk may find comfort in knowing that they do not have to fear a particular disease. However, a person who finds out that they are at risk and there is nothing that can be done about it may experience years of fear and anxiety. And the availability of genetic testing may be more widespread than the availability of genetic counseling which can be very expensive. The possible stigma and discrimination that those with illness or at risk for illness must also be considered. In light of the high costs of health insurance, many companies are starting to offer benefits contingent on health assessments and lifestyle recommendations; and continued coverage depends on an employee following these recommendations. So a smoker may have to pay a higher premium than a non‐smoker or a person who is overweight may be required to engage in a program of exercise and be monitored for improvement. What if a person finds out that they carry the gene for Huntington’s disease (a neurological disorder that is ultimately fatal) which may surface when a person reaches their 40s? The impact this knowledge will have on health care still remains unknown. Who should know what is on your genome? Do you think this information should be shared between mates? What about employers? What would be the advantages and disadvantages?