As part of this block’s genetics course, 4% of our grade was based on attending yesterday’s small group ethics session. We went over three cases, drew out pedigrees, identified the likely genetic disorder, and discussed ethical issues related to the cases.
During the final case of this session, an interesting scenario was brought up. Let’s say a husband and wife are planning on having their first child. The husband has a brother, father, and deceased grandfather who all have/had Huntington’s disease (HD), but the wife has no history of HD.
Fast forward. The wife is fifteen weeks into her pregnancy, and now the couple wants to know if the baby has HD. To do this, both the father and baby will be tested (the father’s results will be used to confirm the baby’s); however, here’s the catch… the father does not want to know his own results.
Now if the genetic test comes back positive for the baby, then you know (with near certainty) that the father has HD too, and 50% of all his subsequent offspring will be at risk in the future. If the baby’s test comes back negative, then the father may or may not have HD although you would know since you ran his test too. As a physician, is it ethical to know that the father has HD (if the baby’s test is positive) and fail to intervene? Though there is no “cure” for HD, if he knew his status, perhaps he could enroll in clinical trials before the onset of his symptoms and possibly have a better prognosis? Most people, including me, will say that one must appeal to the father’s autonomy and not disclose his test results.
Let’s go one step further. The baby’s test came back negative (the father may or may not be positive for HD, but again, you know if he is). The couple has a second pregnancy… and a third… and perhaps more. They want to have their fetuses tested for HD in each pregnancy. Keep in mind that the process of testing is dangerous for both the mother and fetus. If the father really is negative for HD, there’s no reason to test the fetuses in the first place. It’s a waste of hospital resources and an unnecessary risk for his wife. Yet he still refuses for the results of his test to be disclosed.
According to our facilitator, the safety of the mother and fetus supercedes the father’s right to autonomy in practice. They’ll tell him the results of his test and move on or refuse to perform the fetal test entirely. My question is where do you draw the line before one party’s ethical rights supercede another’s?
Oh yeah! Ethics baby! Such a murky treacherous area that few brave. I gotta say the mother and fetus’s rights should outweigh the father’s rights in this case if only from a numbers point of view. It’s two against one, pure democracy rules that the father loses his rights.
More seriously though, why risk two lives repeatedly(assuming they do test several fetuses) just because daddy can’t/doesn’t want to deal with the reality of his situation? There’s therapy for this kinda stuff isn’t there? Great article Rishi! Now I’ve got a lot to think over, and it’s a Saturday to darn it! 😛
Sometimes I wonder if it’s our own fault that ethical considerations in medicine are so complicated. In our pursuit to put the patient first while simultaneously adhering to the “do no harm” mantra, we end up drawing so many arbitrary lines and finding exceptions to the rules in order to make everyone happy. *Sighs*, I have a tremendous amount of respect for the ethicists who have to make these tough decisions on a daily basis.