The most accurate test to determine predisposition to malignant hyperthermia is a specialized muscle biopsy that analyzes the response of a piece of muscle taken from the thigh to a triggering anesthetic. But it is available in only a handful of centers and can cost more than $6,000. A genetic test is available that can be performed on a blood sample, but its accuracy still needs to be improved...Then, from Intervention and Reflection: Basic Issues in Medical Ethics, 8e (Robert Munson), a rundown of ethical issues pertaining to genetic testing in general (all emphasis mine):
- "Rarely is the case that if a person carries a certain gene, she will invariably develop a genetic disease...single-gene disorders...account for only about 2 percent of genetic disorders." This could very well be the bane of many tests.
- Autonomy: "We are torn between seeing the value of knowing and the comfort of not knowing," especially when there exists at the time no remedy.
- Continuing the logic of the first quote, Munson contrasts "genetic predisposition" with a 100% probability of developing the disease - for example, xeroderma pigmentosum versus Huntington's disease.
- The risk of discrimination is definite, particularly in the areas of employment, insurance, and the concept of human worth. Critics of testing who focus on the last category give several reasons: (1) "[W]hat condition is sufficiently serious to justify a decision to have an abortion (or, alternatively, avoid implanting an embryo with a certain gene?" (2) Testing with the aforementioned aim is "a form of discrimination against people with disabilities." (3) Lessening the number of disabled people in this fashion can have at least three consequences: (a) "those with the condition will have a smaller community," leading to more isolation; (b) "the group might lose much of its political influence"; and (c) "researchers will no longer be motivated to develop new drugs or treatments for the diseases or disabilities people now live with." Predictably, advocates respond.