The principle of justice as fairness in a precedent setting case:

And then there's the question of justice over here which is the fourth principle I want to mention. Usually, justice is distributively understood. How do we fairly allocate finite societal resources? Concerns about justice don't emerge except in conditions of scarcity or perceived scarcity. When there are unlimited resources, or there are thought to be unlimited resources, you don't have to worry about equitable distribution. But it's when you perceive resources to be finite that you have to begin to be concerned about how to fairly distribute what is available.

This is how the emphasis on medical ethics and ethics committees, at least, had their genesis back in 1962 in Seattle when the first hemodialysis machines were becoming available and there were many, many people with end stage kidney disease who needed dialysis - more people than there were machines. The question was how to choose among this large number to offer them dialysis. It proved to be such a difficult problem that eventually the decision was made by the Federal Government to pay for everybody with end stage renal disease to have them dialyzed. In 1962, they estimated that would cost the Federal Government $800,000 a year. Today it's probably costing $4 billion a year and it's led to a strange inequity: end stage kidney disease is treated differently in the United States than any other end stage disease, whether it's liver or heart or lung. In other words, there is a Medicare entitlement to dialysis and renal transplantation, which you don't have if you go into congestive heart failure. The cost of a test for BRCA-1 is between $1,500 and $2,000. That's for BRCA-1. Who's going to pay for that? This is a question of justice.

Q: Can you clarify what BRCA refers to?

YOUNG: BRCA-1 is the susceptibility gene for breast cancer or it's one of the mutations. BRCA-1 and BRCA-2 are two of the mutations and there may be hundreds. We're not sure of that. But those are two of the common mutations associated with a high incidence of breast cancer in certain groups of women. Again, it's only certain groups of women. And because it's not widely helpful to be tested, insurance companies are typically not picking up the bill. But on the other hand, because people want to avoid tangling with the insurance companies, even if they were picking up the bill, they'd rather pay for it themselves than bill the insurance company and then have the insurance company know that they've tested positive, so this is a lot of money.

And the question arises, who's going to be able to afford genetic testing? Especially when you think of the global context, where let's say in certain African countries the per capita amount spent on healthcare each year by the government is maybe $10.00 per person. It's unthinkable that this kind of testing would be available to anybody but the really affluent.

False positives and negatives means weighing harms and benefits…

By the way, when I was talking earlier about genetic testing, one thing I didn't mention was the problem of false negatives and false positives. Because that further compounds this whole thing. None of these tests is 100 percent sensitive and specific. They're all 98 percent, 99 percent, which means that you're going to have a percentage of people who test positive falsely and who test negative falsely. And again, you want to go back to harms and benefits, what's the potential harm of getting a false positive or even a false negative, when you're told you're clear and in fact you have this disorder, or you're told that you have it but in fact you don't? That again is part of the uncertainty that makes the weighing of harms and benefits so very difficult.


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