I just got back from my sons psych appointment and one thing that came up was the new studies that have linked autism, bipolar, ADHD and other mental illnesses by a common gene varient. His dr said this is the first time a mass study has been done of this kind. He then added for an oppurtunity to participate in more studies and how he felt my son would be a benifit to the study. He said once more research is done better treatment for mental illnesses could be in the horizon. My husband and I have been talking and he's not comfortable allowing our son to take place in the studies. Me on the other hand I'm all for it, and my son is as well. Like I said in a previous post he wants to help the world one day understand mental illnesses :) So would you let your child participate?
It's the continuing studies that are being done by NIMH.
Depends on what is involved in the trial. Do you know that yet. That would be my deciding factor. Interesting though.
I would. Generally, studies for children are non invasive, and if the test is invasive in any way, you will be informed about it and given the option of declining. Your son's privacy will not be compromised in any way.
I completely understand both you and your husband's viewpoints. My children regularly take part in studies involving Type 1 Diabetes. I had concerns at first, but it really is okay. My kids feel good that they are contributing to research for their disease.
Have your husband make a list of all the questions that he has, and he can present his questions to the doctor, or the person(s) conducting the study. It will help set his mind at ease. It will be good for your son, too! :)
Many hugs to you and your family. You've been through a lot!!!
These longitudinal clinical studies usually have very positive impacts on the family and their overall knowledge and coping strategies with such diagnoses. Simply because you have the opportunity to be exposed to cutting edge research techniques and the educated people behind them using the the analysis platform. So, let's say, while you're in for an evaluation, you can go in prepared with all your questions and thoughts about articles read and news reports, etc, and ask away. You'll have access to a variety of researchers, nurses, MDs, clinical psychologists over the years and that aspect will and would never hurt your own level of understanding.
In a nutshell, I would vote Yes for the long term benefits alone. You must fit the requirements of this study, otherwise they would not have approached you.
spelling check: genetic, benefit are with e's.
Depending on what's involved, yes. Just testing, evaluation, minimally invasive stuff like drawing blood or EKG or EEGs, sure. I wouldn't do experimental medication though.
ETA Mum4ever if you're going to be the spelling police, you should know that the word you were attempting is "diagnoses" - the plural of diagnosis, no apostrope as it is not possessive.
I'd have to know more details like the time commitment and convenience and what exactly he'd be exposed to but in general, yes I would. I'd be very curious what might be learned for him and for other families. If your son is enthusiastic, this might motivate him to become a doctor or something!
Like Angela S, I too am wondering if he's talking about MTHFR mutations.
In fact, I plan to have myself and my daughter tested. We already have a genetic liver mutation, and it seems this MTHFR mutation might piggyback off the one we already have.
There is a wonderful Web site run by an amazing researcher who has done some astonishing work in this area. In fact, the researcher himself discovered he has both of the variants of the MTHFR mutation. Also--the MTHFR mutation is NOT just about mental illness dis-ease; there are MANY different disorders and dis-eases that seem to lead back to this mutation.
For more info, please check out his Web site:
http://mthfr.net/
I agree it depends on the procedures and if your son knows, understands and is comfortable with those.
If your husband is not comfortable, maybe more information could help. Ask the doc for the informed consent form to be mailed/faxed to you so you can discuss the specifics of what is involved.
Personally, I would want him to do it, but I would want the whole family to be in agreement before involving him in the study.
Feel free to PM me with any questions - I work in clinical research.
yes....when we lost our daughter during her 2nd day of heart surgery, we had wanted to do organ donations....but it was not an option for her.
After going through a counseling program, we opted for "Gift of Body". It is a difficult decision to make, & many parents grieve/hate their choice years later. We are now at 19+ years.....& we still are proud of our choice. Our daughter had a very rare condition, well....mulitple defects. In our hearts, we knew it was important to donate in hopes of saving the next baby!
In your son's case, every little bit helps "us" find answers for the next child. :)
Yes, I would. Nothing gets better if scientists can't study the issue. I would make a list of every possible question I could think of and ask ask ask until I felt OK. This research is essential and CANNOT be conducted without the researchers jumping through more hoops than you could imagine.
I spent a summer as a research assistant in college and to do a relatively "simple" study at the college level required multiple reviews and revisions by the Ethics committee. Their sole purpose is to ensure the long-term health and safety of the participants. They don't really care about whether or not you get to do your study. They are the "liability" screener for the major universities and corporations and they insanely detail-oriented.
Ask your questions and do what you can to persuade your husband. Most likely, this will involve a series of interviews, rating scales and trials of either therapies or medications or a combination of the two.
I don't have an answer but I'm curious if they are studying MTHFR mutations (your doc may not have said).
Just wondering . . .
If your husband is adamantly opposed to it, then no, I would not do it. It is not healthy for your marriage to go ahead with it when husband is against it. Since a study is usually ongoing, every time it comes up, your husband will be unhappy and it will cause problems.
Guys are often wrong, but it's not good to go ahead and do it our way even when we are right. The best thing for your son is a healthy, happy family, and this will affect your family negatively long-term, unless you can get your husband's buy-in.
In your situation, I would say yes to a clinical trial. These things are managed according to a very high standard of bioethics -- they won't be poking and prodding him like a lab rat. (Really, once something has been approved for use, and a company starts to market it, that's when the ethical standards start to fall.) A trial could give him access to therapies and treatments that wouldn't be covered by insurance. And even if it didn't, it'd be a chance for him to do something for others, and that right there could be a huge benefit for him. People with special needs aren't always given that many opportunities to be helpful and valued and appreciated -- they're on the receiving end, but they're not often asked to be on the giving end. If he has a chance to be a helper and a giver for something really important like this, it could really help him forge a pro-social identity.
The other thing is, if it doesn't work, if you're not comfortable once he's enrolled in the trial, you can leave. They don't have the right to force your participation once you sign up.
So, there might be a good reason to leave. But I can't see a good reason not to start.
I have worked in research for many years and would definitely participate, myself and children, in any number of studies, however not without my husband's consent.
Also, I am still leary of genetic studies...though it totally depends on the scope of the study and what personalized genetic info will be attached to you/your son, if any. Since your son presumably already has a diagnosis it may not matter, but with the health insurance industry being the fiasco that it is in our country, I would fully investigate, as best as you can, if having genetic info might influence the treatment covered/available for him in the future. Like if he needs to switch providers at some point, will they exclude previously existing conditions? If they find a genetic marker for something he doesn't have symptoms of yet, will they refuse to insure him? However, genetic studies are very specific and they are not likely to "find" something they are not specifically looking for, so he won't be an open book by any means.
I fully stand behind research and the good it can/does bring, but hesitate if it involves health information that could be used against me in an ever changing world of insurance and politics.
It might help for your husband to meet with the researchers or talk to them on the phone. In the consent forms they will clearly explain everything...some studies anonymize genetic info and don't give it to participants so the personal health impacts are nill. You could easily get a copy of the consent and all study materials for your husband to review. You can also get on the phone and ask a gazillion questions before signing and joining. You are also allowed to leave any study at any time, without repercussions. Review boards for human research are very strict and even if you ask a thousand questions, the decision is yours...the researchers are not allowed to entice you or make you feel that gathering information obligates you in any way. However, joining a study costs researchers money that is usually wasted if you leave the study, so you should not join if you don't have a good faith plan to follow through.
Yes-if the testing would in no way harm my child.
