All rights reserved. Human genomic information is invested with enormous power in a scientifically motivated society. Genomic information has the capacity to produce a great deal of good for society. It can help identify and understand the etiology and pathophysiology of disease. In so doing, medicine and science can expand the ability to prevent and ameliorate human malady through genetic testing, treatment, and reproductive counseling.
Genomic information can just as powerfully serve less beneficent ends.
Information can be used to discover deeply personal attributes of an individual's life. That information can be used to invade a person's private sphere, to alter a person's sense of self- and family identity, and to affect adversely opportunities in education, employment, and insurance. Genomic information can also affect families and ethnic groups that share genetic similarities. It is sometimes assumed that significant levels of privacy can coexist with widespread collection of genomic information. We want to believe that we can continue to acquire and use voluminous data from the human genome while also protecting individual, family, and group privacy.