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Ethics and Eugenics Down Syndrome Abstracts

Developmental Medicine & Child Neurology 33 (4): 336-342 (1991 Apr)

Doctors' decisions and prognostications for infants with Down syndrome

Wolraich, Mark L.; Siperstein, Gary N.; Reed, David
Vanderbilt U, Child Development Ctr, Nashville, TN, USA
193 pediatricians (PDs), 161 family practitioners (FPs), and 130 pediatric surgeons (PSs) completed a questionnaire, which included questions regarding their decisions about treatment of duodenal atresia in hypothetical infants with Down syndrome, one with complete trisomy 21 and one with mosaicism. Ss were more likely now to advocate surgery than in the past. PDs and FPs had similar views, but PDs were more assertive about treatment if parents refused. PSs had the most pessimistic outlook and a greater number would not encourage surgery. There was a relationship between the doctors' prognostications and their decisions about treatment. Results emphasize the importance of ensuring that doctors have accurate perceptions about the capabilities of individuals born with Down syndrome.
Mental & Physical Disability Law Reporter 10 (5): 364-5 (1986 Sept-Oct)

"Baby Doe" records not disclosable

An Illinois federal court ruled that the chief counsel for a public interest law firm could not use the Freedom of Information Act to compel disclosure of medical records. These records were obtained by the Department of Health and Human Services in its investigation of possible withholding of medical care from a newborn infant with Down's syndrome: Marzen v. United States Department of Health and Human Services, 632 F. Supp. 785 (N.D. Ill. 1985).
Issues in Law & Medicine 1 (6): 419-440 (1986 May)

An approach to Down syndrome in light of Infant Doe

Elkins, Thomas E.; Brown, Doug
U Michigan Medical School, Div of Gynecology
Discusses issues concerning neonatal decision making following the birth of a Down's syndrome child. The stages through which parents progress (shock, denial, guilt, sadness, anger, anxiety, and ambivalence) are described, and the question of who should be responsible for making judgments about the child's interests and treatment (i.e., parents, physicians, society) is discussed. It is suggested that decision making should be conducted in a framework that best allows for growth and nurturing for both the family and the patient. The concepts of recognizing the positive aspects of a disabled family member and new advances in understanding Down's syndrome are also examined.
J Med Ethics 9 (3): 152-7 (1983 Sep)

Abortion and euthanasia of Down's syndrome children—the parents' view

Shepperdson B.
A study of 78 parents of Down's syndrome children shows that, while most were in favour of abortion for a handicapped fetus, they were divided equally on whether euthanasia (no distinction made between active and passive euthanasia) was an acceptable practice. Only a third considered an average Down's syndrome child could be a suitable candidate for euthanasia. While parents argued that the degree of handicap of the child was the crucial factor in making this decision, in fact the social class of the parents themselves was the only variable which was statistically significantly related to their opinions. Differences arose from the parents' lack of agreement on what constituted a sufficiently severe handicap.
KIE: A 1981 study of parents of Down's syndrome children in South Wales surveyed parents' attitudes toward abortion and euthanasia for severe congenital handicaps. Of the 78 parents responding, 60 approved of abortion for a handicapped fetus. They were equally divided on whether euthanasia, active or passive, was acceptable but only a third approved of euthanasia for the average Down's syndrome infant. Although parents considered the degree of handicap the crucial factor in their decisions, researchers found social class to be the only statistically significant variable.
Mental & Physical Disability Law Reporter 6 (3): 135-154 (1982 May-June)

Summary & analysis: Discussions of the Baby Doe case and the proposed revisions of the Education for All Handicapped Children Act

Discusses the case of Baby Doe, a baby in Bloomington, IN, who was born with Down's syndrome and allowed to die of starvation because its parents refused to authorize life-saving stomach surgery. Also discussed are the rights of handicapped children to good public education and threats to these rights by the Reagan administration. These rights are discussed in terms of mainstreaming, nonbiased testing, and the effects of increased state control over education.
Revised: November 7, 2005.