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MEDICAL ETHICS: GENOMICS AND PHYSICIAN OBLIGATIONS

The following points are made by Andrew Garrison (J. Am. Med. Assoc. 2003 290:1217):

1) Medical ethicists have traditionally referred to beneficence, nonmaleficence, respect for autonomy, and justice as fundamental principles of medical ethics.(1) In some cases, however, adherence to these principles produces competing ethical obligations. Such is the dilemma when a patient with early Huntington disease (HD) forbids her physician to disclose this diagnosis to her daughter. The daughter is a patient of the same physician; she has a 50% chance of inheriting the HD mutation, which inevitably causes the disease.

2) The principle of respect for autonomy suggests that the physician defer to the mother's wish and not disclose her diagnosis. On the other hand, the principle of beneficence is most relevant to the physician's relationship with the daughter.(2) The beneficent act would be to inform the daughter of her risk for HD so that she can decide whether to receive genetic testing and potentially prevent transmitting the mutation to her children.(3) Although some authors have suggested that patients have a "right not to know" about their risk for serious genetic diseases that lack effective treatments,(4) informing the daughter that she is at risk would preserve her right not to know whether she has the HD mutation while offering her the opportunity for testing.

3) Unfortunately, no inherent feature of the four principles provides a method for untangling such conflicting obligations.(5) They describe the physician's obligations to each patient individually but do not shed much light on how to balance incompatible duties. Thus, the physician must look elsewhere for guidance when basic principles alone are inadequate to resolve an ethical conflict. What method should the physician use in resolving this dilemma? Some ethicists would suggest that the physician ought to reason inductively on the basis of similarity to previous cases (a "bottom-up" approach), while others would favor a "top-down" approach, in which the physician would select general principles that describe a way to sort out competing obligations, and then apply these to the specific case. In practice, however, the choice of problem-solving strategy may be irrelevant, as different approaches may nonetheless yield the same solutions. Of course, there are cases in which rational people disagree about both action and rationale; sorting out these differences is indeed a major project of ethicists. The relevant point, however, is that the physician might avoid the gridlock of conflicting principles by applying consensus-based ethical guidelines. This approach would circumvent the dilemma of selecting strictly a top-down or bottom-up approach, and instead incorporate the strengths of both.

References (abridged):

1. Nicholson RH. Limitations of the four principles. In: Gillon R, ed. Principles of Health Care Ethics. New York, NY: John Wiley & Sons; 1994

2. Beauchamp TL, Childress JF. Principles of Biomedical Ethics. 5th ed. New York, NY: Oxford University Press; 2001

3. Goizet C, Lesca G, Durr A, for the French Group for Presymptomatic Testing in Neurogenetic Disorders. Presymptomatic testing in Huntington's disease and autosomal dominant cerebellar ataxias. Neurology. 2002;59:1330-1336

4. Terrenoire G. Huntington's disease and the ethics of genetic prediction. J Med Ethics. 1992;18:79-85

5. Clouser DK, Gert B. A critique of principalism. J Med Philos. 1990;15:219-236

J. Am. Med. Assoc. http://www.jama.com

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