As you may know my son and his wife are considering a family. A local Dr. whom I am acquainted when approached gave me a big concerned look when I broached the subject. He stated he wasn't comfortable with it (which is his prerogative) but he also questioned the ethical issues. Can anyone enlighten me on this issue?

Thanks,
Mike

I know it's considered against protocal (some say unethical) to test a minor. My at risk son has ADHD and autism and probably some defiant disorder characteristics. It is likely that his actions/symtoms are not related to HD, but it is also possible that they may be. I would like to have him tested because I might then feel better able to steer clear of some of the drugs that may not be the best for someone with HD if he is positive. Some of those drugs are the more mild/lesser side effect drugs, while the ones that might be better if he's HD positive are stronger with more side effects. So I feel frustrated, but I also understand that my testing him would take away his rights. But this isn't your son's situation.
I sure can't understand why it would not be "ethical" for an individual to decide to test annoymously. In fact, I think it would be wise based on discrimmination and unfair insurance practices. Maybe the doctor is thinking if a person is symptomatic for HD, but then doesn't share that information and thus due to their symptoms they could be a danger in certain professions? That's the only "unethical" thing I could think of...withholding HD information that could hurt another person. Maybe he's worried that the person who wants to test would not be psychologically ready for positive results without counciling?

With the possible ramifications testing anonomously would be wise and it has been done many times.

The protocols call for confidential but not anonymous testing. I don't know the reasoning on this, perhaps it has to do with the doctor's inability to follow up and make sure that the testee is doing all right and doesn't need treatment for depression.

If a protocol is not followed is it then deemed unethical?

Thanks,
Mike

Gee, and who decides what is unethical anyway? unethical does not mean illegal. I say whatever you are comfortable with, and it does no harm, it's ethical for you.

I would be curious to hear why the doctor thinks it is unethical. I don't think it is. It's a different story if a parent wanted to test their minor child who was not displaying symptoms. I believe this is unethical but not an adult testing annonymously.

With mixed emotions I have to report my Son and DIL have decided to go forth without testing. According to them it would not change their minds. I can only accept the decision and pray it's the best. I want a grandchild yet I'm the cautious one. I can only pray it is the best thing for them. Thank you all for your support.
Mike

Does anyone know how we can get tested? We dont want to go through all the genetic "councelor" visits and do the psyciatric evaluations. We just want to pay for a test. My wifes mother was diagnosed with HD and died at age 40 from it, but we cant get her medical records, and dont want to jump through all the stupid red tape and spend the several thousand dollards. We just want pay for the test. Anyone know any place we can go? Mexico? Cuba?

Any MD can order the test. The counseling and other procedures are not mandatory. It is a simple blood test that your family doctor can order and you should have the result within a few weeks. That's how we did it with my daughter.

I finally had my internist tell me you can get the test (didn't say where) then they can draw the blood. Pay for it out of pocket. I don't blame you. I'm not sure what you would do if applying for insurance at some point in the future if the test is positive.
Mike

Since my Dad had HD and I had symtoms, my doctor ordered the blood test and had blood drawn same day. No counseling at all. Just a message on the phone 10 days later that the test was positive. Insurance even paid for the test. Needed anti depressent after hearing the news so some couseling bnefore might have helped. The test is just another blood test for the system now.

Mark

Since my Dad had HD and I had symtoms, my doctor ordered the blood test and had blood drawn same day. No counseling at all. Just a message on the phone 10 days later that the test was positive. Insurance even paid for the test. Needed anti depressent after hearing the news so some couseling bnefore might have helped. The test is just another blood test for the system now.

Mark

Marky, I didn't have counselling either, because I was having "some kind" of neuro problems, they wanted to get to the bottom of it right away, and I wanted to too, I wanted to know what was wrong with me, that I wasn't just stupid and forgetful. But in hindsight, a few months later, I did wish that I had had counselling too, not to find out if I wanted to know, I did want to know, but to have a support network of people for after I got the news.

Hi Barb, my neurologist wanted me to see a shrink (can't spell the correct title) I think to help build a network of people to help. Didn't click to well
with him so I didn't a the follow up visits he wanted me to do. I found speding time on this site seems to do me more good than the so called expert.
Can relate to so many stories on here and for me the information I have gotten from peaople like Will has made a difference for me. Everyone keep
up the great work on this site!

I agree with Pat, this is a very personal decision. What ever you feel comfortable doing in the way you choose to test, that is hardly unethical. I balk at the notion that the protocol must be followed...especially if you've been around the block a time or two with HD. Our family has done it both ways...either way the news smacks you right in the head and it was no comfort to be getting that news in the sterile, public office of the COE. Just sayin'!

Take care,

Carla