DawnM Posted April 2, 2014 Share Posted April 2, 2014 to an adoptee? Purpose would be to find out medical history/possible predispositions to issues. Why or why not? Thanks, Dawn Quote Link to comment Share on other sites More sharing options...
Liz CA Posted April 2, 2014 Share Posted April 2, 2014 If there are some medical issues that need to be addressed, yes. If tests can tell the propensity toward something like heart disease, etc. I think it's helpful to know. Supposedly, medicine in the future will take us down this path anyway so we can get more individualized care. Quote Link to comment Share on other sites More sharing options...
Slartibartfast Posted April 2, 2014 Share Posted April 2, 2014 No because it would be like shooting fish in a barrel. There are too many tests and without some sort of idea of what one was looking for the costs would be substantial. Quote Link to comment Share on other sites More sharing options...
Starr Posted April 2, 2014 Share Posted April 2, 2014 Plenty of us don't know the illnesses we are predisposed to. Personally I would just take them as they come or don't. Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted April 2, 2014 Share Posted April 2, 2014 23andme used to offer a screening for $99 but the FDA made them stop offering it last fall. You can still have the testing done for $99 but they aren't providing the interpretations any more. Supposedly they're now working with the FDA to gain approval for the interpretations. Quote Link to comment Share on other sites More sharing options...
Mrs Mungo Posted April 2, 2014 Share Posted April 2, 2014 No because it would be like shooting fish in a barrel. There are too many tests and without some sort of idea of what one was looking for the costs would be substantial.I agree. I've been through genetic testing with the BRACplus test. It specifically looks at 6 genes. I think the test cost my insurance around $3k. Even though I was in a high risk category, it was all negative, and I've been moved down a bracket (based upon screenings in addition to the genetic testing) to the normal population, so I don't have to have as many tests and such.Two of my kids have also been through genetic testing. But, again, they were looking for something specific in both of those cases.If you had specific health issues that were leading you toward doing genetic testing, then it is something that your doctor would likely recommend with some specific guidance, not just a crap shoot.23andme was testing *ancestry*, not looking for genetic mutations or disorders. Those are entirely different processes. Quote Link to comment Share on other sites More sharing options...
DawnM Posted April 2, 2014 Author Share Posted April 2, 2014 I saw that. My friend got the whole thing done a year ago. 23andme used to offer a screening for $99 but the FDA made them stop offering it last fall. You can still have the testing done for $99 but they aren't providing the interpretations any more. Supposedly they're now working with the FDA to gain approval for the interpretations. Quote Link to comment Share on other sites More sharing options...
Mergath Posted April 2, 2014 Share Posted April 2, 2014 I probably wouldn't. Even if you find that the person in question is predisposed to something, it doesn't mean they're going to get whatever it is. My dd is missing part of her sixteenth chromosome, but at this point she is almost completely unaffected by it. Honestly, I wish I'd never found out, because what I imagined and worried about for years was so very much worse than the reality. And we would have treated the articulation issue anyway, so practically, knowing about the deletion didn't really do much of anything. If it was me, I might consider some of the tests that let you know if you're at a high risk for breast cancer or various reproductive cancers, because the risk is extremely high if you have these genes and you can do something to prevent it once you find out. But otherwise, you're just setting yourself up for years of worrying. Quote Link to comment Share on other sites More sharing options...
Elisabet1 Posted April 2, 2014 Share Posted April 2, 2014 A basic genetic screening would cost thousands, could be covered by insurance, but would only uncover things that would have sort have been obvious anyway. To test for specific things, like Huntingtons or Brain Aneurysms, well, technology is still working on those and it would be way more than the generic genetic testing. Plus, it would have to be looking for those exact things, and there are a ton of things to look for. As a woman, I might check for the breast cancer gene. But anything else, wouldn't bother. How about finding the birth family? Quote Link to comment Share on other sites More sharing options...
Danestress Posted April 2, 2014 Share Posted April 2, 2014 I don't have adopted children. But it sort of bothers me to think about my parents or DH's having that intimate of information about us. It's so permanent. And we are close to our parents. We are not really secretive, so I not sure why this troubles me. It just gives me pause to think about a parent being able to get such thorough and personal information, and then having it forever. The kid can't grow up and make his own decisions about what to share and what is private. Obviously if there is a good medical reason, it might need to be done - at least a limited analysis. But it seems like a major ethical issue to do a fishing expedition type genetic mapping of a child and then turn all that information over to a parent to do with what he or she will with the information. Quote Link to comment Share on other sites More sharing options...
KungFuPanda Posted April 2, 2014 Share Posted April 2, 2014 DS needed one genetic test. It was about 4-5 k and they knew where to look. We know exactly which exon was skipped on which gene. I'm not sure what you'd choose to look for? There is no Everything Test you can take for curiosity's sake, is there? Quote Link to comment Share on other sites More sharing options...
Catwoman Posted April 2, 2014 Share Posted April 2, 2014 I agree. I've been through genetic testing with the BRACplus test. It specifically looks at 6 genes. I think the test cost my insurance around $3k. Even though I was in a high risk category, it was all negative, and I've been moved down a bracket (based upon screenings in addition to the genetic testing) to the normal population, so I don't have to have as many tests and such. I'm glad your test results were all negative. :hurray: Waiting for the results was probably the most stressful part of the whole thing. I hate waiting for results, because I'm not one of those people who assumes nothing will be wrong -- I'm the idiot on the computer late at night, finding the worst case scenario on Google. :rolleyes: Quote Link to comment Share on other sites More sharing options...
Catwoman Posted April 2, 2014 Share Posted April 2, 2014 Oops, double post! :blush: Quote Link to comment Share on other sites More sharing options...
DawnM Posted April 2, 2014 Author Share Posted April 2, 2014 I am not sure I am following you. If the adopted child (or adult in this case) gets genetic testing, it would NOT be linked to the bio parents or their records because they aren't named. I don't have adopted children. But it sort of bothers me to think about my parents or DH's having that intimate of information about us. It's so permanent. And we are close to our parents. We are not really secretive, so I not sure why this troubles me. It just gives me pause to think about a parent being able to get such thorough and personal information, and then having it forever. The kid can't grow up and make his own decisions about what to share and what is private. Obviously if there is a good medical reason, it might need to be done - at least a limited analysis. But it seems like a major ethical issue to do a fishing expedition type genetic mapping of a child and then turn all that information over to a parent to do with what he or she will with the information. Quote Link to comment Share on other sites More sharing options...
Danestress Posted April 2, 2014 Share Posted April 2, 2014 I am not sure I am following you. If the adopted child (or adult in this case) gets genetic testing, it would NOT be linked to the bio parents or their records because they aren't named. By 'parents' I mean you and DH. I am concerned about the ethical issues of doing some kind of full genetic mapping of a healthy child that the parents would have access to. It just seems like too much to me - a loss of privacy for a future adult. Eventually we may be able to get more and more information from genetic profiling. I am not sure, as an adult, that I would want my parents to know everything about me that this would reveal. Let's say that they had a firm marker for Alzheimer's. This is something that would not affect me until I was all grown. But if my parents learned I had it at 10, and then shared that with their closest friends and relatives, it's easy to imagine that by the time I was 21, lots of people would know. It could affect my job and marriage prospects. But even if my parents honored my privacy, I might still feel robbed of the chance to decide for myself if I wanted them to know. Quote Link to comment Share on other sites More sharing options...
BigMamaBird Posted April 2, 2014 Share Posted April 2, 2014 My BIL and SIL just had a baby a month ago and had that PKU test done in the hospital. It came back that she has a disorder that in some cases can be very severe and disruptive. They're not sure the severity of it yet, but the fact that they know and can keep and eye on it is very empowering to them. This is something that could, undiagnosed, case failure to thrive and a host of other issues. If anything concerning comes up, they have an idea of where to start. Personally, if I were going to adopt, a genetic test would be very helpful to me. If something treatable showed up you could be on top of it before something serious developed. Quote Link to comment Share on other sites More sharing options...
tabinfl Posted April 2, 2014 Share Posted April 2, 2014 If 23andme works out their issues with the FDA, I will be doing it for my adopted children. It's not exhaustive or definitive (my husband and i did it), but it does provide clues that can help medical care -- both increased / reduced disease risks and potential abnormal drug reaponses. We didn't get much in the way of family history from their birth parents, so every little bit helps. As more and more genes are identified, the data will be even more useful. More specific testing can always be done later if there is a specific concern or problem. Quote Link to comment Share on other sites More sharing options...
Chris in VA Posted April 2, 2014 Share Posted April 2, 2014 Only for specifics, and only on a doctor's recommendation. If, for example, something like CF was suspected, then of course I would. We have CF in our family--I waited until my kids were older teens (except dd) to discuss them getting testing done to see if they are carriers. Quote Link to comment Share on other sites More sharing options...
DawnM Posted April 2, 2014 Author Share Posted April 2, 2014 Oh, then let me say this.....this is NOT for my adopted child. It is for an adult who is choosing this. By 'parents' I mean you and DH. I am concerned about the ethical issues of doing some kind of full genetic mapping of a healthy child that the parents would have access to. It just seems like too much to me - a loss of privacy for a future adult. Eventually we may be able to get more and more information from genetic profiling. I am not sure, as an adult, that I would want my parents to know everything about me that this would reveal. Let's say that they had a firm marker for Alzheimer's. This is something that would not affect me until I was all grown. But if my parents learned I had it at 10, and then shared that with their closest friends and relatives, it's easy to imagine that by the time I was 21, lots of people would know. It could affect my job and marriage prospects. But even if my parents honored my privacy, I might still feel robbed of the chance to decide for myself if I wanted them to know. Quote Link to comment Share on other sites More sharing options...
Catwoman Posted April 2, 2014 Share Posted April 2, 2014 Oh, then let me say this.....this is NOT for my adopted child. It is for an adult who is choosing this. I think if this person is stressing over health issues and would feel better having more information, he or she should go ahead and get tested. I wouldn't recommend it out of the blue to someone who wasn't already strongly considering it, though, because I wouldn't want to give them something to start worrying about! :) Quote Link to comment Share on other sites More sharing options...
umsami Posted April 2, 2014 Share Posted April 2, 2014 I'm adopted (closed adoption that's how it was back then) and I got testing through 23andme. I am so so glad I did because very little health information was passed on. Totally worth the $99. :) Quote Link to comment Share on other sites More sharing options...
DawnM Posted April 2, 2014 Author Share Posted April 2, 2014 Yes, but they no longer give health info. I'm adopted (closed adoption that's how it was back then) and I got testing through 23andme. I am so so glad I did because very little health information was passed on. Totally worth the $99. :) Quote Link to comment Share on other sites More sharing options...
umsami Posted April 2, 2014 Share Posted April 2, 2014 Yes, but they no longer give health info. Not sure, but I think you can still get your sequence and then feed it into one of the third party tools. http://www.23andyou.com/3rdparty Quote Link to comment Share on other sites More sharing options...
Danestress Posted April 2, 2014 Share Posted April 2, 2014 Oh, then let me say this.....this is NOT for my adopted child. It is for an adult who is choosing this. I am so sorry Dawn. I need to read more thoughtfully. For an adult who has specific concerns, I would certainly recommend talking to a doctor about it. Other than the cost, what is the down side? Quote Link to comment Share on other sites More sharing options...
SewLittleTime Posted April 2, 2014 Share Posted April 2, 2014 By 'parents' I mean you and DH. I am concerned about the ethical issues of doing some kind of full genetic mapping of a healthy child that the parents would have access to. It just seems like too much to me - a loss of privacy for a future adult. Eventually we may be able to get more and more information from genetic profiling. I am not sure, as an adult, that I would want my parents to know everything about me that this would reveal. Let's say that they had a firm marker for Alzheimer's. This is something that would not affect me until I was all grown. But if my parents learned I had it at 10, and then shared that with their closest friends and relatives, it's easy to imagine that by the time I was 21, lots of people would know. It could affect my job and marriage prospects. But even if my parents honored my privacy, I might still feel robbed of the chance to decide for myself if I wanted them to know. All 3 of my children had genetic testing last summer. My oldest is the only one that tested positive for what we were looking for. His disease may not affect him until much later in life, but we needed to know if he had the gene mutation. Yes, lots of people will know by the time he is grown. Yes, it will affect his future spouse and even if he will have children. It will take a very special woman to marry someone who has a disease that we know is genetic and can be passed on. Will it affect his job? Possibly, if he needs surgery to remove a tumor that will develop with our particular disease. But can I guarantee my son will not care a bit about if I invade his privacy by having him tested. If anything, he'll be thankful that we know, so we can treat a very ugly disease that is often misdiagnosed. In our case, we were looking for a very specific thing in doing the genetic testing that affected not just his life and his parents, but also his siblings. My two negative children have other issues to deal in being negative. They have will to come to terms with that they might be caregivers at some point to me or their brother. They may even deal with guilt that they don't have it and were spared. So, this is a heavy issue. My husband has also had some difficult moments. We didn't know I had the mutation before we married or had children. Had we known it might have changed how we planned for our family or if we would have married at all. Regardless of the ifs, he has been supportive, loving, and an advocate for us. He drives us to appointments and sits endless hours waiting while imaging tests are done on us. He listens and allows me to cry when I need to. OP, I don't know the specifics, but in our case, genetic testing was medically necessary and life saving. If that's the case, then yes, go for it. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.