Advances in human genetics. 5 / edited by Harry Harris and Kurt Hirschhorn.

Date:
1975
Catalogue details

Licence: Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0)

Credit: Advances in human genetics. 5 / edited by Harry Harris and Kurt Hirschhorn. Source: Wellcome Collection.

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    Chapter 5: Genetic Screening Legislation 339 Nixon, making the first major political statement about sickle cell anemia in 1971, said: It is a sad and shameful fact that the causes of this disease have been largely neglected throughout our history. We cannot rewrite this record of neglect; but we can reverse it. To this end, the Administration is increasing its budget for research and treatment of sickle cell disease fourfold, to a new total of $6 million. The transcripts of Congressional hearings held on the dimensions of the sickle cell anemia health problem provide an interesting source by which to trace the disease from its obscure recent past to its current prominence. Robert Scott^®^'^®® noted that, from a research funding perspective, sickle cell disease received woefully less than what its dollar share would be if measured against the reality of the public health problem that it represents. Much rarer diseases were getting more support as research problems. The public (including blacks) was largely unaware of the disease. In 1970, volunteer groups raised over 7 million dollars for the struggle against muscular dys¬ trophy. In the same year, only about 50,000 dollars was raised for sickle cell research.^®® The genesis of state sickle cell anemia screening laws is not easily ex¬ plained. The civil rights movement of the 1960s which led to a new deference to the black vote and to an impressive increase in the number of black officeholders provided the background for these laws. Among the more obvious inequities in our society was the dehvery of health services. Once the screening technology was available, testing for sickle cell anemia became a cause célèbre of the newly elected black state politicians. The deceptively low cost of such programs and their apparent benefit to the black citizen (many persons thought screening was to identify the homozygous, disease state) stimulated legislative efforts in this direction. A conference of black politicians in Chicago in 1972 may have been an important source for the dissemination of the value of a sickle cell screening law.^^® The first laws were usually written and introduced by black legislators and passed without debate.^^^ During an 18-month period between 1970 and 1972, twelve states and the District of Columbia enacted some kind of sickle cell anemia screening law.^^® Seven states made some provision for sickle cell screening pursuant to Medicaid regulations.^®^ Barely had the initial wave of legislation been passed than a storm began to build around the propriety of sickle cell screening itself.^°~^^'^°® A bit tardily, the black community began to perceive that in the wrong hands knowledge about one's genetic profile could become the latest and most insidious rationale for discrimination. Reaction to sickle cell heterozygosity