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Urgency the Only Relevant Criterion
In response to the ethical issues raised by Alfred Lane, M.D., ("Healing the Wounds That Never Heal," Spring 1999), I would argue as a basic principle that whenever we are addressing a situation in which our choice literally means life or death for another person, our primary obligation is to that person. This would mean that in the treatment of infants with Epidermolysis Bullosa, all considerations apart from the urgency of the infant's predicament are irrelevant. The family's possible helpfulness to the program or ability to pay ought not enter into the discussion. This basic principle provides an orientation that normally holds but is not absolute. One exception I can think of would be the infant whose prognosis is so bad that treatment is simply not warranted; triage at times is necessary.
The other case would be similar, where an infant's defect is so extremely rare that the cost involved would be prohibitive. These exceptions should be clearly stated in the policy, which would be available to prospective parents.
As to the availability of a supportive environment for the infant, a minimal requirement could be stated that would not favor the middle- or upper-class family but simply acknowledge that there are basic conditions needed in order to ensure the continued well-being of the infant.
The auxiliary expenses could be paid up to a publicly stated level (perhaps the round-trip flight expense), should a family be in a difficult financial situation, but the family should be expected to pay their temporary housing expenses, even if it means borrowing the money.
In regard to the wisest use of funding, either for research or treatment, I would argue that long-term considerations ought to prevail. Cost and possible lack of success are not reasons for stopping the necessary research, for the failures are important in guiding the efforts that ultimately lead to success.
Paul Jersild Lutheran
|Issues in Ethics - V. 10, N. 2 Fall 1999|
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