The "right" to have retarded children?
was listening to an interview with a university professor who had spent quite a few years studying this issue.
basically, fundamentalist mormon groups (some) keep inbreeding and passing a gene that causes a disease that results in severe mental retardation of the child. in addition to that, the children need considerable medical care which comes of course, largely at the cost of the state and tax payers.
its an interesting ethical issue... should you have a child if you know it will be severely retarded? should you do it at the expense of tax payers?
Fumarase deficiency is extremely rare. Until roughly 18 years ago scientists knew of only thirteen cases worldwide . However, recently twenty additional cases have been documented in the Arizona/Utah border towns of Colorado City, Arizona, and Hildale, Utah These two towns constitute a closed and controlled community, and were settled in the 1930s by the Fundamentalist Church of Jesus Christ of Latter Day Saints, which is a breakaway sect now unaffiliated with The Church of Jesus Christ of Latter-day Saints. As such, many of the surrounding communities refer to this disease as "Polygamist's Down's"
Dr. Theodore Tarby, a pediatric neurologist who has treated some of the sect's affected residents, has been quoted as estimating the IQ of these patients as around 25. Tarby was treating a child with undetermined developmental difficulties when he learned there was a sibling with what was being described as cerebral palsy. Upon examining the other child, he sent off urine samples for definitive testing only to learn that his patients had a disorder so rare that only 13 other current cases were known. Assuming these numbers are correct, the new cases Tarby uncovered now account for approximately 60.6% of all known cases of Fumarase deficiency.
The fumarase deficiency allele has become very common in this community due to the practice of endogamy. It is believed that Joseph Smith Jessop, one of the founders of the communities, and his first wife carried the mutant allele. According to the Phoenix New Times, the rare disease appeared when their 12th child, Martha Jessop, married her second cousin, John Yeates Barlow, in 1923.. The same article states that some 20 cases have now been documented and that further intermarriage between the Jessop and Barlow families will surely result in more afflicted children. There is the possibility of perhaps hundreds of new cases in future generations if preventative measures are not adopted by the group members who are suspected carriers of the allele. More alarming still is the recent development of a satellite community in Eldorado, Texas, where a temple has been built by FLDS Church members. This new community is populated with many members of these two extended families who can be presumed to be potential carriers of the recessive allele.
The populations of Colorado City and Hildale could be considered examples of the founder effect.
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