Sunday, February 14, 2010

Comment Elsewhere: Bad Genetics Counseling

In response to a great but difficult question on genetic testing, I wrote:
It's very important to get good information on genetics -- I'm not saying you're not, because you clearly know how to read scientific material critically, but my blind spouse talked to a "genetics counselor" before we were married who literally didn't know the difference between recessive and dominant traits, and freaked us out (until I could get over to the medical library and do some research, this being pre-WWW).


Terry said...

I, too, carry an inheritable issue, bipolar disorder, and passed it on to 1 of my 3 kids. Now that daughter is debating about whether to take a chance on having children of her own, without anyone to advise her.

Both she and I participated in a genetic study of Bipolar Disorder, the results of which have not been released yet. We don't know if we have the gene which causes it, or if 3 generations of my family have suffered it randomly. So she doesn't have much solid evidence to go on.

Had I known I would pass it on, would I have hesitated to have children? Most probably, and that would have been a great loss in my life. Even though my daughter has challenges, she also has joys, and I can't imagine the world without her.

Ahistoricality said...

In our case, my spouse's condition is a recessive syndrome -- which means that both my in-laws carry the gene -- which can produce a variety of effects beyond blindness; my spouse, who's just blind, didn't have any of the other organ failure, intellectual development issues or early death which can come along with this particular syndrome, but there's no guarantee that -- if I also carried the gene -- our child wouldn't be much more severely affected. That's why the genetics research was so important: we come from sufficiently different genetic backgrounds that the odds of us sharing one of those nasty recessive traits is very, very low. Not zero, of course, but no worse than it is for most people.

There are times when knowledge isn't really a blessing: we're at a point now with genetics that we can see the problems increasingly clearly, but there's nothing resembling a solution on the horizon. Not medically, and not ethically.

Terry said...

I can why that package of symptoms would give you plenty of concern. Someone in evo biology would say that this is why "opposites attract," because it's safer to reproduce outside your own gene pool. I'm not sure about that, but in my own case many generations of cousin marriages probably had something to do with the high frequency of bipolar disorder in my birth family.

I do agree with you that knowledge isn't necessarily a blessing. But information is still a good thing, I believe, for no other reason that to take some of the mystery that haunts these decisions. And it is a major ethical dilemma, one I'm glad I didn't have to face.

The councilor you saw was worse than none. Is there any sort of accreditation for genetics?

Ahistoricality said...

Agreed, all around.

As far as I know, there's no national accreditation for genetics counselors, though there is an organization that monitors graduate programs. I'm quite sure our encounter was with someone who had neither graduate nor undergraduate training....