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 351 the new Ohio law indicates that it was a direct response to the offer of federal money. The health director is to accept and administer grants from the federal government. This is the first section of its kind in any of the laws. Despite its efforts to satisfy the federal statute, the failure of the Ohio law to embrace confidentiality of test results will certainly be noticed by grant administrators. Kansas®^ and New Mexico^^^ passed sickle cell screening laws in early 1973. Both became effective on July 1 of that year. The Kansas law provides for a statewide program for blood tests for sickle cell trait and the disease sickle cell anemia.®^ Free counseling services are to be given to persons screened. Voluntarism, the principal federal prerequisite, is not mentioned in the law. Provision is made for confidentiality of test results. In fact, Kansas has become the first state to deter invasion of test confidentiality by making that a criminal misdemeanor.®^ The New Mexico law also appears to be a response to the federal law, but as written it certainly fails to comply. Its decision to launch a public education program about the nature and inheritance of sickle cell trait, and sickle cell anemia,^^^ is laudable, but what is needed is general education about human genetics. Special attention to a single disorder will inevitably cloud its meaning to the lay person. However, the main objection to the state law is that it commands the health and social services board to provide by regulation for the testing of all school age children who may be susceptible to sickle cell trait and sickle cell anemia. The language must be interpreted as a mandatory screening program. The new North Carolina legislation sets up a Council on Sickle Cell Syndrome. Similar to the Maryland program, the Council is to investigate the problems associated with screening, particularly discrimination against persons with sickle cell syndrome and to suggest further legislation after experience with pilot programs. North Carolina will furnish testing and counseling services to all persons requesting their utilization. The North Carolina law contains several unique provisions. It defines sickle cell syn¬ drome to include sickle cell thalassemia, and variants as well as sickle cell trait and disease.^®^ Thus it too is expanding its disease coverage. It requires that counselors be trained according to criteria established by recognized authorities in the field of human genetics.Like the laws of Massachusetts and Maryland, this statutory language may require the formulation of licens¬ ing requirements for genetic counselors. The North Carolina law also requires that any voluntary mass screening set up by the state be preceded by a 60-day period of public educational effort. In late 1972 South Carolina enacted a sickle cell anemia education and