Medical Ethics and the Disabled

By A. G. Moore 9/26/2012

Phenylketonuria (PKU) is a rare genetic disorder in which the body is unable to breakdown an essential amino acid, phenylalanine. Untreated, PKU can be devastating: profound intellectual and behavioral abnormalities ensue. So, when the cause of PKU was discovered and a way to prevent its terrible consequences determined, heroes of science were born. My investigation into the work of one of these heroes, George Jervis, led me on a trail which was littered with what appears to be lapses in medical ethics. While my inquiry into the methods of Dr. Jervis continues, I feel obliged to take note of others who have engaged in what appear to be violations of human rights.

Since I am not a medical researcher and run the risk of being accused of naiveté in these matters, let me turn to the AMA for guidance.

In 1947 the AMA sent an envoy, Dr. Andrew Ivy, to serve as an adviser to prosecutors in the Nuremberg Trials. Ivy produced a set of principles which he thought should be a minimum ethical standard in human medical experiments. It was largely these principles which informed the decisions of the judges at the Nuremberg trials.

The very first principle enunciated was: “Consent of the human subject must be obtained. All subjects must have been volunteers in the absence of coercion in any form. Before volunteering the subjects have been informed of the hazards, if any”. Another principle laid down was: “avoid all unnecessary physical and mental suffering and injury”.

With these principles in mind, I now describe an experiment carried out at the University of Maryland Medical School in the early 1950s. The authors of the paper which explains the rationale and methodology of this experiment were: Alton Meister, Sidney Udenfriend and Samuel P. Bessman.

Two siblings, who are described as “imbeciles”, are the subjects. These children are an 8-year-old girl and a 7-year-old boy. Weights: approximately 40 and 27 lbs., respectively. Fasting is enforced before the test takes place. Blood is drawn from each child prior to the introduction of test material. After the introduction of the test material, blood is drawn hourly. This is accomplished by means of “femoral puncture”. Test material (glutamine, glutamic acid or asparagine) is introduced by means of a “gastric tube”. Urine is collected through an “indwelling catheter”. The authors explain that: “Two or three such studies were performed on each patient per week”. The number of weeks for which this test continued is not indicated.

What is indicated is that these two siblings were used in at least one prior experiment by  Drs. Udenfriend and Bessman.

I’m going to refrain from editorial comment here, leaving that chore to the reader. In carrying out this chore, however,  the reader should hold in mind those small bodies which became vessels for the researchers’ experimental compound. One of these children weighed less than 30 pounds. Tubes were inserted to introduce the foreign substance; tubes were inserted to extract byproducts of the substance. The femoral artery was invaded repeatedly. The emotional state of these children throughout the experiment is not addressed–though one can ponder how these children, doubly defenseless by virtue of extreme youth and intellectual deficiency, experienced this medical adventure.

And one may also contemplate, did the children submit passively throughout these painful assaults on their bodies? Or were restraints necessary?

If the scenario I’ve described passes your gut test, then I ask you to apply more critical tools and refer to the Nuremberg standards prescribed by Dr. Ivy.

According to these standards, the researchers who conducted this experiment failed abysmally in their ethical obligation. The children in no way consented, were incapable of giving such consent, and could not have had understanding of the consequences of acceding to such procedures. These children were in no sense of the word “volunteers”. As for coercion, how else would one describe helpless children at the mercy of adults?

Finally, with regard to the Nuremberg mandate to “avoid all unnecessary physical and mental suffering and injury”–there is no way to calibrate the pain suffered by someone so young and so incapable of articulation as these two intellectually impaired children.

PKU can be a devastating disorder. The world is full of devastating diseases. The urge to find a cure for these is strong–and laudable. But a challenge every researcher confronts is to find a cure without losing sight of the ultimate mission of medicine: alleviate suffering. Experimenting on helpless individuals in order to advance research is a betrayal of medicine’s most basic tenets.

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