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.

    379/408 (page 361)
    Chapter 5: Genetic Screening Legislation 361 Is there a sufficiently strong public health benefit to stimulate legislation of this kind ? Perhaps the strongest single argument in favor of such an effort is its potential for the immediate reduction in the number of births of children with Down's syndrome in this country. A detailed argument in favor of routine cytogenetic screening of pregnancies in older women has already been made.^'^® It considers and dismisses the risks of aminocentesis as a mass screening tool and it advocates the offer of pregnancy termination to all mothers carrying affected fetuses. As the number of important genetic diseases that may be diagnosed in utero prior to the third trimester grows, the public health argument is strengthened. The ability to diagnose sickle cell anemia antenatally^® would provide tremendous impetus for making prenatal testing available to those who might choose to utilize it. An important element of the legal objection to compulsory amniocentesis would be the risk to mother and child. This risk may be so minimal as to be effectively nonexistent.^^^ Currently studies are under way that pursue a more arcane formulation of this objection. It is not yet possible to dismiss con¬ sideration of negative developmental effects of amniocentesis, but followups of children born after the procedure have been initiated. The objection that amniocentesis and the lengthy diagnostic lag due to cell culture time introduce needless anxiety in the pregnant woman is difficult to shape into a legal argument. It may soon be possible to utilize placental paracentesis to harvest fetal blood, which could permit cytogenetic diagnosis within a week's time^^^ and mitigate that objection. Routine antenatal screening of all pregnancies is technologically possible, supported by powerful cost-benefit arguments (if it is assumed that most affected fetuses are aborted)^^ and does not constitute a major break with state exercise of public health power. Although compulsory legislation to foster such a program might be able to withstand Constitutional attack, less distasteful methods will no doubt be chosen. Compulsory antenatal screening legislation is not yet politically feasible in the United States. However, it is notable that Denmark already has embarked on a program to reduce the births of children with genetic disease. Sterilization is required of one partner if both persons are carriers of a dele¬ terious allele that can manifest as an autosomal recessive disease.This program is certainly more invasive of personal freedoms than a compulsory screening law. Yet, it is politically feasible in a nation not that much unhke the United States. Mandatory legislation and administrative fiat are the two most overt methods available for directing citizen behavior; they may not be the most effective. It should be recalled that PKU screening, carried on in nations with a strong national health service, achieved results comparable to those in the