PubMed · 2741029
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L Arbøl. 1989-01-11. [A dreadful and uncharitable void].. https://pubmed.ncbi.nlm.nih.gov/2741029/
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In September 1992, the U.S. Public Health Service (USPHS) recommended that all women capable of becoming pregnant should consume 400 microg of folic acid/day on an ongoing basis to reduce their risk for having a pregnancy affected by spina bifida and anencephaly (i.e., neural tube defects [NTDs]). The recommendation was preceded a year earlier by a CDC recommendation for women at high risk (i.e., those women who have had an earlier pregnancy affected by an NTD). The 1991 CDC recommendation stated that women at high risk should plan subsequent pregnancies and consume 4,000 microg/day of folic acid from the time they begin trying to become pregnant through the first trimester of pregnancy to reduce their risk. The 1992 USPHS recommendation specified that women at high risk should follow the general population recommendation for consumption of 400 microg/day when not trying to become pregnant.
Spina bifida and anencephaly are serious birth defects. To reduce the occurrence of these birth defects, the Food and Drug Administration authorized the fortification of all enriched cereal grain products with folic acid in March 1996, with compliance mandatory by January 1998. This report reviews data reported to CDC's National Center for Health Statistics (NCHS) regarding spina bifida and anencephaly prevalence for live births in the United States during 1991-2001. Since 1989, NCHS has compiled birth defect data from checkboxes that appear on birth certificates. For consistency in trends, this report uses data for 1991-2001 from all U.S. reporting areas except Maryland, New Mexico, and New York. Data for 2001 are preliminary. During 1996-2001, a 23% decline occurred in neural tube defects (spina bifida and anencephaly combined). Spina bifida declined 24% during this period, and anencephaly declined 21%. The United States has experienced declines in spina bifida and anencephaly cases since folic acid fortification of all enriched cereal grain products. The observed declines have translated into approximately 920 infants being born without these serious defects each year. Continued monitoring of the occurrence of spina bifida and anencephaly will be necessary to evaluate the effectiveness of folic acid fortification.
All societies must ration health care services in the face of unlimited demand. The concept of medical futility may appear to be an uncontroversial means by which to ration services. Depending upon how it is applied, however, limiting services based on alleged medical futility may violate prohibitions against disability-based discrimination. In particular, use of medical futility to require removal of life-sustaining interventions has been held to violate the Americans with Disabilities Act. The ADA protects both people with disabilities who are conscious and people in unconscious states, such as permanent vegetative state (PVS), coma, and anencephaly. Ultimately, as the number of people in permanently unconscious states increases, our society will have to recognize that consciousness is an essential characteristic defining human beings and determining whether a legal right to unlimited life-sustaining intervention should apply. This article proposes to define medical futility to preclude life-sustaining interventions after a stated period of permanent unconsciousness and to redefine the end of life consistently as neocortical death.