Need Genetic Counseling. Help!
April 6, 2011 10:56 AM Subscribe
My partner and I need to get Genetic Counseling before attempting IVF, IVF with ICSI, or IUI. Help!
My partner and I are trying to get pregnant, but for a variety of reasons we have been advised to get Genetic Counseling. The reasons for Genetic Counseling are sound and we have had this recommended to us independently from several medical specialists due to:
1. Possibility of needing to do either IVF with ICSI, or IUI with donor sperm due to male partner’s sperm count/quality.
2. Possibility of several autosomal recessive disorders being carried.
3. Family history of cancer, heart conditions, and other medical concerns.
The complicating factor is that we live in a very small country with no genetic counseling available - we will need to travel internationally for this (likely US/Canada - although we are not citizens of either country). The only referral we got from our current doctors was for a genetic counselor who only handles full end to end genetic screening for IVF. They don’t do initial prenatal screening.
We feel a bit lost, and we have some questions for the Metafilter hive-mind.
1. We are probably on our own to actually find a genetic counselor? What should we look for? Are their certain certifications/qualifications we really need to look for? Are there any pitfalls we should be aware of?
2. Are the phone-based Genetic Counseling services (like InformedDNA – just to name one) any good? is their any reasons that in-person genetic counseling would be better then a phone/remote service?
3. We have Aetna Global Insurance - should we keep this off the radar of the Insurance Carrier? We have heard horror stories in our country that Aetna and other insurers will reject future conditions and in some cases not cover the pregnancy if certain conditions are identified during genetic counseling or if we proceed with IVF. We can probably afford to pay out of pocket for genetic counseling (based on our understanding of costs) but if we can use the insurance it would be a good thing.
4. Does the hive-mind recommend any good resources for people in our position?
My partner and I are trying to get pregnant, but for a variety of reasons we have been advised to get Genetic Counseling. The reasons for Genetic Counseling are sound and we have had this recommended to us independently from several medical specialists due to:
1. Possibility of needing to do either IVF with ICSI, or IUI with donor sperm due to male partner’s sperm count/quality.
2. Possibility of several autosomal recessive disorders being carried.
3. Family history of cancer, heart conditions, and other medical concerns.
The complicating factor is that we live in a very small country with no genetic counseling available - we will need to travel internationally for this (likely US/Canada - although we are not citizens of either country). The only referral we got from our current doctors was for a genetic counselor who only handles full end to end genetic screening for IVF. They don’t do initial prenatal screening.
We feel a bit lost, and we have some questions for the Metafilter hive-mind.
1. We are probably on our own to actually find a genetic counselor? What should we look for? Are their certain certifications/qualifications we really need to look for? Are there any pitfalls we should be aware of?
2. Are the phone-based Genetic Counseling services (like InformedDNA – just to name one) any good? is their any reasons that in-person genetic counseling would be better then a phone/remote service?
3. We have Aetna Global Insurance - should we keep this off the radar of the Insurance Carrier? We have heard horror stories in our country that Aetna and other insurers will reject future conditions and in some cases not cover the pregnancy if certain conditions are identified during genetic counseling or if we proceed with IVF. We can probably afford to pay out of pocket for genetic counseling (based on our understanding of costs) but if we can use the insurance it would be a good thing.
4. Does the hive-mind recommend any good resources for people in our position?
Hi. It sounds like you need two separate things: prenatal genetic testing and also genetic counseling. Genetic testing is the collection and actual testing (of your blood, saliva, etc.) and in a health care setting, it is done by a geneticist (an MD) or perhaps a clinical assistant. Genetic counseling is the explanation and interpretation of those results to the patient, and (in the US at least) it is performed by a certified genetic counselor.
Genetics and genetic disorders are... really complicated- far more complicated than biology textbooks and news stories bely. And research and screening techniques are moving lightning fast, and sometimes contradictory. Furthermore, should your results indicate that you and your partner are carriers or otherwise have the possibility of conceiving a child with a genetic disorder, you might want to know the actual risk (percentage-wise) or the specifics of the disorder, or the resources available to families who have children with that disorder. Some individuals don't understand what chromosomes are or how genes work (it sounds as though you are very well educated, OP, but to some, genetic terminology is foreign and intimidating). Some individuals feel overwhelming grief or guilt at the revelation that they are carriers. So a genetic counselor acts as sort of a liaison between the patient and the testing, and helps you make very specific and personalized decisions (as opposed to mail services like 23 and Me, which do not provide patient support or have any real accountability).
To me, it sounds like a genetic counselor (coupled with genetic testing) would be ideal for you. It seems like you have very specific and complicated questions about you and your partner's reproductive future, and I think a genetic counselor could help you. If you have the cash to get to Canada or the US, then the added cost of seeing a genetic counselor would likely be nominal. If you are amenable to traveling to the US, then a good place to start would be NSGC. You can search for a genetic counselor by zip code, or inquire with them for referrals that are specific to your insurance situation.
Best of luck to you. I am the daughter of a genetic counselor, please feel free to contact me if I can help you.
posted by heyheylanagirl at 6:35 PM on April 6, 2011
Genetics and genetic disorders are... really complicated- far more complicated than biology textbooks and news stories bely. And research and screening techniques are moving lightning fast, and sometimes contradictory. Furthermore, should your results indicate that you and your partner are carriers or otherwise have the possibility of conceiving a child with a genetic disorder, you might want to know the actual risk (percentage-wise) or the specifics of the disorder, or the resources available to families who have children with that disorder. Some individuals don't understand what chromosomes are or how genes work (it sounds as though you are very well educated, OP, but to some, genetic terminology is foreign and intimidating). Some individuals feel overwhelming grief or guilt at the revelation that they are carriers. So a genetic counselor acts as sort of a liaison between the patient and the testing, and helps you make very specific and personalized decisions (as opposed to mail services like 23 and Me, which do not provide patient support or have any real accountability).
To me, it sounds like a genetic counselor (coupled with genetic testing) would be ideal for you. It seems like you have very specific and complicated questions about you and your partner's reproductive future, and I think a genetic counselor could help you. If you have the cash to get to Canada or the US, then the added cost of seeing a genetic counselor would likely be nominal. If you are amenable to traveling to the US, then a good place to start would be NSGC. You can search for a genetic counselor by zip code, or inquire with them for referrals that are specific to your insurance situation.
Best of luck to you. I am the daughter of a genetic counselor, please feel free to contact me if I can help you.
posted by heyheylanagirl at 6:35 PM on April 6, 2011
Essentially you want the initials "MS, CGC" behind the name in order to assure yourself of a board certified GC. If a state offers licensure, you may also see LGC but that's more a formality of practicing in that state than a qualification per se. Then you want experience in your particular area of concern: preconceptual counseling for infertility pts. The National Society of Genetic Counselors and the American Board of Genetic Counseling both have search engines for genetic counselors though neither is particularly user friendly. The Canadian Association of Genetic Counsellors may also be a resource. I believe Informed DNA's clinical counselors all are boarded and the firm is designed for those in your situation: people who need a GC but don't have one local. I would not recommend 23andMe for your purposes as it is not geared toward reproductive issues. Consider Counsyl instead; they also have GC's on staff and are geared towards the reproductive market. Also, if you have a IVF clinic already in mind, many of the larger US ones have GC's on staff who can work with you over the telephone.
posted by beaning at 6:52 PM on April 6, 2011
posted by beaning at 6:52 PM on April 6, 2011
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posted by Mchelly at 11:14 AM on April 6, 2011