Ethical Issues!
Today we had an interesting lecture entitled, “Ethical Issues in Genetic Counseling.” It was probably our most interactive lecture yet, because it dealt with some pretty thought provoking issues concerning ethics in genetic counseling. In the lecture she taught us about the role of a genetic counselor. Basically, a physician can refer a patient to a genetic counselor for pre-natal screening in cases where a patient has elevated risks of birth defects. The risks include: family history of birth defects or genetic diseases, consanguinity (inbreeding), exposures to mutagens, recurrent pregnancy loss, or advanced maternal or paternal age during conception. Basically, one of the main roles of a genetic counselor is to help patients make informed decisions for their family, in a way that doesn’t influence the patient’s decision.
You probably have already gathered that this can be a very delicate issue. Whatever your stance is on abortion, I would like you to appreciate that there are very valid clinical reasons for pre-natal genetic screening. The lecturer tried to teach us about potential ethical issues that could arise from actual cases she has encountered. The names and scenarios were altered for obvious reasons.
At this point I would like to share a few cases I thought were interesting. During the lecture, she presented a case and asked for our opinion. After a little debate she told us how most clinicians typically handle these situations. So for now I will just present the case, tell you what is typically done, and allow you to share your comments and opinions if you would like to share. She presented a lot of interesting cases. Unfortunately we had 7 hours of lecture today so I have a lot to review, and I’m short on time. But I wanted to take a break and share a few examples of some of the cases. If enough people like this sort of entry I can write about the other cases later on. So here goes.
Case 1: A 27-year-old woman who has already given birth to 4 healthy babies, is now pregnant again and wants a prenatal diagnosis. But she tells you that she would not continue the pregnancy if the child is a female. What do you do?
Student responses:
-Perform the procedure, because it’s an elective procedure. It’s the patient’s choice and our responsibility to do so.
-Don’t perform the screening because there is no benefit to the patient, and it’s immoral.
Clinical Consensus:
- Typically, in such a case, the clinician wouldn’t perform the screening, and would refer the patient elsewhere.
-Most physicians wouldn’t do the screening in this case. Even though, it is an elective procedure, there is often a backlog of appointments and patients at significant clinical risk deserve priority.
Case 2: Now what if the woman from case 1 was 40 years old, and was referred for genetic counseling because of advanced maternal age?
Clinical consensus:
-Most physicians would perform the screening because there is a legitimate medical reason. Advanced age during conception increases the risk for birth defects.
Case 3:
-A woman comes in for a prenatal diagnosis
-Her husband’s mother and sister have Huntington’s disease
-(Huntington’s disease is a severe neurodegenerative disease in which symptoms appear beyond middle age.)
-However, her husband doesn’t want to know if he has the disease.
-It is an autosomal dominant disease, which means that if the child is affected, you will know that the father also has the disease.
What do you do?
Clinical consensus:
-Clinicians view the entire family as the patient.
-Refer back to my post about the white coat ceremony, and read the Hippocratic oath. (In it we swear to do no harm.)
-Informing the mother would indirectly inform the father. This would devastate the father. At this point there is a 50% chance the child would be affected, and wouldn’t be affected till later in life. So the risk to the father out-weighs the pros for the fetus.
-Note: she said she had a funny story where the mother brought in another man to pretend that he was the father in order to convince the clinician to do the screening.
Any ways I need to get back to studying. But I would love to hear what people would do in such a situation. And if you want I can add some more interesting examples later on. Thanks!
Brotha, I think this is your best post yet. Here are my thoughts:
Case 1:
I think the intro needs to be a little more specific. I’m assuming that the case means that she currently has 4 healthy babies, and that she wants the prenatal diagnosis on the 5th baby that she is currently carrying.
I understand why it’s a tough decision. I mean if someone asks you for an answer, and you know that if your answer is “female” she’s going to abort the baby, what should you do?
It follows that in case two, a woman with the same exact scenario except that she is 47 years old would get the treatment. Since the difference is possibilities of birth defects, we can conclude that birth defects are a legitimate reason to get an abortion.
I’m not saying that abortions are right or wrong; I’m just saying that according to the cases presented above, birth defects seems to be a deciding factor of whether a doctor believes a woman should get an abortion.
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Awesome post. I look forward to learning more!
Thanks for pointing out the confusing intro Jun. I’m glad you enjoyed the post. I re-worded it and hopefully it clears up any confusion.
Thanks for sharing your input. I’m not sure if I got my point across effectively. Something I should have stressed more was that the point of genetic counseling is to offer information, to empower a patient to make an informed decision about what’s best for their family. More importantly it should be done in a way, that doesn’t direct the patient one way or the other.
So with regards to the example you noted, I think a doctor wouldn’t condone an abortion or not based on a birth defect. The doctor’s responsibility is only to inform the parents that their child may have a birth defect. If so, it doesn’t necessarily mean the fetus should be aborted. The lecturer told us that most times, when a family hears their child has a genetic defect that isn’t severe, they continue with the pregnancy and are better prepared to care for that child once it is delivered.
She gave a metaphor that I think is useful to explain this. She said one summer, she went to holland on a vacation, while all her friends went to London. The first week she was there, she was bummed that she wasn’t in London. It wasn’t until she accepted that she wasn’t in London with everyone else, that she could enjoy being in Holland.
The point being that, raising a child with a genetic defect can be very rewarding and parents love them just the same. So knowing ahead of time can prepare parents for that transition.
That being said, knowing whether or not your child has a severe genetic disorder associated with a lot of suffering and early mortality, could influence a family to abort the pregnancy.
All the doctor and counselor should do is give the patient information for them to make a decision.
(I didn’t mean for this to be such a long comment, maybe I should post it.)