This is not the first time in our history that human genetics has been used to discriminate. In the 1920's in the United States and in Europe, genetic explanations for disease and human variation were routinely considered. Scientific thinking reduced complex individual and societal characteristics to the functional result of gene action. However, previous reliance on genetic explanations waned because the ability of genetic approaches and information to explain disease was highly limited and primitive. Scientists and other citizens were horrified at the application of genetic information to exclude immigrants, justify sterilizations of the mentally retarded, psychiatrically ill, and alcoholic, prohibit marriage between racially and genetically distinct groups, and exterminate minorities in other countries. Although the underlying forces which made genetic explanations seductive remained, the science supporting them failed, and the United States' tradition of protecting individual civil liberties was asserted. The use of genetic information was thus appropriately limited by weaknesses of its science and by the society it sought to alter.

The approach of the 1930s is similar to that offered today. Human genetics, however, is now far more sophisticated and successful due to technical progress and its application to simple human genetic phenomena, about which predictions and descriptions can be far more accurate than in the past, but the current situation also differs from the past because of the sums of federal and private investment in the field and pressure for profitability from the biotechnology industry. Routinely, researchers downplay the repetitiveness, limitations, and frequent insignificance of many molecular genetic observations. They also may minimize the fact that human genetic insights do not necessarily lead to useful new therapies or preventative strategies.

New forces and old traditions continue to shape and distort the significance of genetic information. Modern DNA-based approaches have not yet been shown to be useful in explaining complex human traits or disorders. Even for relatively "simple" conditions inherited in Mendelian patterns within families, the impact of genes is highly dependent on other biological, developmental, environmental and personal factors. Therefore, there is no scientific basis to use genetic data to deny health care coverages to individuals. Even if DNA information were highly predictive for the development of a condition for a group of people irrespective of other modifying factors, the right to high quality health care should not be contingent on any test result or inherited predisposition in this or any society.

Given current social conditions in the United States, the use of genetic information by the insurance industry can only worsen inequities already present in our troubled health care access and delivery system.

1. Reprinted from The Genetic Resource, newsletter of the New England Regional Genetics Group (NERGG), Brookville, Maryland, vol. 8 (1994), p. 44. [Return to text]

Editor's note: Consumers concerned about discrimination based on DNA information should make their voices heard in discussions in their local areas toward building protective laws.

As published in the VHL Family Forum 5:1, March 1997. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.