Genetic Information


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Advances in human genetics, and especially the completion of the Human Genome Project, have focused attention on the potentially numerous ways that genetic information may be used to improve and benefit health and health care.  Despite excitement about the anticipated benefits that the use of such information may generate, many have raised concern about the potential for misuse of this information as well.  Genetic information can be defined in many ways, but it generally refers to information about genes, gene products, or inherited characteristics generated through either genetic testing or analysis of family history.

The term ‘genetic exceptionalism’ refers to the idea that genetic information is inherently unique, should receive special consideration, and should be treated differently.  This idea is based on the supposition that genetic information itself embodies several characteristics that may make it special and differentiate it from other medical or even personal information.  According to the perspective of genetic exceptionalism, the characteristics of genetic information that make it different include the following: it can be predictive of future disease; it is a unique identifier; it can reveal information about family members; it is vertically transmitted (passed from parent to child); it can impact communities; it can be used to discriminate and stigmatize; and it can cause serious psychological harm.  In addition, although not specific to genetic information, the following characteristics also describe genetic information: it can be obtained from small samples (possibly without consent); it may be used for purposes other than those for which it was collected; it is of interest to third parties (such as employers and insurers); it may be important for determining susceptibility to disease and effectiveness of treatment; and it can be recovered from stored specimens after many years.  These characteristics are not unique to genetic information; other medical information may also have some of these characteristics in common with genetic information.  However, it may be argued that there is little medical or personal information that shares all of these characteristics with genetic information. 

Genetic information is viewed as powerful, perhaps uniquely so, by society and has been regarded with some degree of awe and respect not afforded other types of health or personal information.  This may be due to the sense that genetic information is immutable and, therefore, that its use merits more caution than might the use of other information.  This heightened caution may be warranted simply because of the perception that genetic information cannot be modified or altered, and that it is not chosen by the individual who bears it.  The differential regard for genetic information may also be related to the idea of genetic determinism, or the concept that our genes exclusively predict or foretell our fate, including health, behavior, and physical characteristics.  Although efforts have been made by responsible scientists to disabuse the public of this notion by stressing the role of environmental factors in disease, it is still fairly persistent, as seen in overly glowing portrayals of genetic discoveries and technologies by the media.