The Hastings Center published an article in its journal IRB: Ethics and Human Research (“Including Persons with Alzheimer Disease in Research on Comorbid Conditions,” 31, no. 1 (2009): 1-6) that I found both alarming and a sign of the increased desire among some in the bioethics and science communities to instrumentalize the most weak and vulnerable among us. The article by Anji Wall, a student at the Center for Healthcare Ethics, Saint Louis University, is not about using Alzheimer’s patients in experiments to understand the condition or find treatments for it. Rather, she wants to open up Alzheimer’s patients to the study of “cormobid” conditions—that is the presence of two or more diagnosable maladies at the same time—such as heart disease, arthritis, diminution of vision, etc. that are not directly related to Alzheimer’s.
Of course, the proposal is couched in terms of being beneficial to these patients since treatment of ancillary maladies experienced by Alzheimer’s patients can improve the quality of their lives. (I am getting whiplash here. Other bioethicists have called for denying expensive interventions to Alzheimer’s patients based on futile care type arguments and social justice rationing principles.)
However, I think this is actually a rationalization to gain access to a large cohort of compliant patients who can’t decide for themselves, to study medical conditions that are not unique to Alzheimer’s patients, and for which subjects can be found with decision making capacities to participate in human trials.
But the author writes as if excluding Alzheimer’s patients from such research—again that is not related to understanding or treating Alzheimer’s itself—is required as a matter of social justice, since these patients could conceivably benefit from therapies that are developed. From the paper (no link available):
The inclusion of individuals with Alzheimer disease in research studies on comorbid conditions is also required for scientifically valid trial design. Phase III and IV clinical trials are designed to include a sample of individuals that is representative of the population who might use the experimental treatment. Considering that the prevalence of Alzheimer disease is 5% in persons 65–75, and close to 50% in persons over 85, individuals with the disease constitute a significant proportion of the elderly population. Therefore, if a study involves a medication likely to be used by the elderly because it is intended to treat a condition common to this population, researchers should recognize that a significant proportion of the target population will have Alzheimer disease, and persons with the disease should be included in the trial in order to study a representative sample of the population. Thus, both the framework of social justice and scientific validity justify the inclusion of individuals with Alzheimer disease in research on comorbid medical conditions.
Never mind that these subjects could be at greater risk because of the inability to communicate well about what they are experiencing. The Nuremberg Code clearly states:
The voluntary consent of the human subject is absolutely essential. This means that the person involved should have legal capacity to give consent; should be so situated as to be able to exercise free power of choice, without the intervention of any element of force, fraud, deceit, duress, over-reaching, or other ulterior form of constraint or coercion; and should have sufficient knowledge and comprehension of the elements of the subject matter involved as to enable him to make an understanding and enlightened decision. This latter element requires that before the acceptance of an affirmative decision by the experimental subject there should be made known to him the nature, duration, and purpose of the experiment; the method and means by which it is to be conducted; all inconveniences and hazards reasonable to be expected; and the effects upon his health or person which may possibly come from his participation in the experiment.
Moreover, the subject has to be able to call a halt, which would not be true with Alzheimer’s patients:
During the course of the experiment the human subject should be at liberty to bring the experiment to an end if he has reached the physical or mental state where continuation of the experiment seems to him to be impossible.
Alzheimer’s patients are individuals, not part of a “group” that will unjustly benefit from treatments if they are not experimented upon. This is particularly true given that there is nothing unique about diseases that afflict the elderly such as glaucoma or congestive heart disease as they affect Alzheimer’s patients vis-a -vis their non afflicted peers.
This article is just the latest in a growing chorus to instrumentalize the cognitively devastated, such as the call to use unconscious patients in animal organ transplant experiments. The issue isn’t whether some Alzheimer’s patients might be indirectly benefited along with other elderly people, from the treatment of heart disease or eye maladies. The issue is that they have no ability to defend themselves. No matter the soothing bioethicseze of “social justice” employed to rationalize the proposal, Wall’s suggestion actually seeks to justify the instrumental use of the weak by the strong. As such, it should be rejected in the most blunt and unequivocal terms.
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