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Who has access to your genetic testing results?


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For those of you that have had the 23andme, what kind of privacy or security does it come with? I did some reading and saw that the woman who owns the company is married to a founder if Google. It doesn't need to be ordered by a doctor and therefore HIPPA laws may not apply...maybe they do? I'm curious. Does google now own the information? It is downloaded into a computer. Does anyone know about the security of this information? I was considering doing this test on my family but am hesitant about any future insurance company having access to any health risks my children might appear to have. It may not seem like a big deal to some, but in my experience it can be a big deal. I do like the idea not having the genetic information as part if ones personal medical record which can follow you forever and any life or health insurer can summon at any time with your permission. (Of course you can choose not to share but you will not get the policy either)

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Right now, genetic information is protected by federal law and not accessible to insurance companies. Insurance companies are currently not allowed to discriminate based on genetic information: http://www.genome.gov/10002328. I have not read the specific law since I know laws change.

 

 

To protect my child we had a distant relative pay for the kit on their credit card, we used a friends address to have the kit mailed to and a fake name to register the kit. I am more concerned about future laws that may allow insurance companies access by court order etc..., hacking into the system, or hard drives being stolen from corporate 23andme.

 

As much as possible, we are trying to protect kiddos data for her future. It may all be for not, but at least I can know I tried my best to keep her secure.

Edited by Mayzoo
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Mayzoo, I copied this from the document

 

The law does not cover life insurance, disability insurance and long-term care insurance.

 

These are big deals as our kiddos grow up, get married, and become responsible for their own families someday. Obama has made it illegal for health insurance companies to discriminate against any preexisting conditions or genetic factors, but we have had that law here in MA for a long time.

 

Google invested many millions into 23andme and may in fact own a good percentage of the company. Any information downloaded onto a computer is at risk for hacking. All I'm getting at is that this is a slippery slope and there are so many unknown factors.

 

I think its very clever to use alternative addresses,ect to try protect their identities.

 

We are considering having this testing done, I am still weighing the surrounding concerns before we do.

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I do appreciate the privacy issues and there are opt-out options when you register your kit. It's a personal decision and I'm not going to try to dismiss your concerns. But one additional step you can take is that once you get your 23andMe results, you can download your data and submit a written request to have 23andMe remove your data from their database. You can of course argue that they'd have backup tapes and information is never really gone. But it becomes a matter of how valuable with this information be to help your child's health long term.

 

When I go to a doctor's office as a new patient, I fill out a form indicating family health history. As medical records become electronic, it will be easier for a health insurance company to flag me for potential heart disease and macular degeneration simply based on my responses. Who's to say that they won't someday start asking people to take genetic tests in the spirit of "preventive" screening - and get your genetic info that way. Genetic testing can give you a statistical probability of developing a disease. But genes need to be switched on or off to lead to disease. Having a mutation does not doom you to having a disease. It means you have a higher probability than someone without that mutation. Are your concerns valid? Yes. But does having information that can improve health today and possibly prevent the development of a disease outweigh the risks of an insurance company gaining access to that information? It's personal decision certainly.

 

But here's a specific example. I found thru 23andMe that I have a CBS mutation. I never, ever would've guessed this from my readings. I tolerate just about every food you're supposed to avoid. Yet it's a factor in heart disease, which is rampant in my family. And it exacerbates issues with your NOS genes, which also contributes to heart disease and inflammatory diseases (which yes, I also have mutations). By treating my CBS mutation and focusing on controlling the amount of ammonia my body has to handle, I may be avoiding the stroke that made my grandmother an invalid.

 

My DD has an MTHFR mutation that increases her risks for "adverse events" from nitrous oxide/laughing gas with dental procedures. I personally think that's really important information as she faces possible extractions pre-braces.

 

By adjusting supplements based on genetic info, my DD is no longer bipolar. My DS is less angry and can focus better. These were changes I made after 23andMe results helped me stop guessing. We were able to stop at least a half dozen supps that were "wrong" for them. I was actually adding to their problems in some cases. Is a childhood freed from neuropsych issues worth some risk of a future big brother issue? For me, absolutely.

Edited by LLM
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Just so you are all aware, anything in your medical record is subject to review by many future prospects. If I do choose to get this type of testing done, I might share the results with my PCP but I will not allow them to make a copy it scan it into my child's records. Insurance companies (life, disability and long term healthcare) can indeed discriminate at this time if you have an "increased chance of" developing a particular illness. I'm not saying the information is not helpful or that the risks don't outweigh the benefits. We are pioneers if a new day and age and it will be interesting to see how this all unfolds. In the meantime, I know I will proceed with caution.

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I believe the information is very important for parents to be armed with when our kids are "medically complicated". I also believe we parents need to do everything we can to protect our kids information for as long as we can. At this time, the only way to trace my daughter's test kit back to my home is through the IP address of checking on the results. Then they will not be positive who in my house the results are for.

 

I read part of the law last night, and saw the exclusions then. Those are not really a concern to *me* on a personal level at this time since I already know my child will never qualify for life insurance, and she will likely be deemed "disabled" as soon as she turns 18. I can see how others would be very concerned about those listed exclusions.

 

I am highly cynical in that I believe, in the next 10-15 years, under the guise of making catching criminals or terrorists sooooo much easier, all genetic testing companies will be mandated to hand all their results over to the government. I also believe that in my child's lifetime we will all be required to submit to genetic testing to determine our rates. Many will say these things can never happen in Amercia, but then again, many have said there is no way Americans will ever be forced to purchase medical insurance against their will or be fined for not doing so. Times and laws are changing, and we the people do not have a vote in many of these changes.

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Here is another company that does genetic testing that 'might' be covered by insurance and is being used by one of our Dr.'s. LLM I am wondering how their results compare to 23andMe results? Are they easier to interpret or similar? My friend had it done by even another company but they did not provide a medication list.

 

EDIT: I just realized YouScript is probably more narrowly focused on your genetic ability to metabolize certain drugs where 23andMe is probably broader reach of overall genetics. YouScript looks like it would be great for figuring out which SSRI and dosing levels based specific metabolism for drug.

 

http://youscript.com/healthcare-professionals/what-is-youscript/sample-reports/

 

JoyBop: Here is a good Nova Episode on genetic testing specifically covering 23andMe. It highlights some of your concerns while also explaining benefits. It is worth watching. I've posted this before.

 

http://video.pbs.org/video/2215641935/

Edited by SF Mom
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Mayzoo, I copied this from the document

 

The law does not cover life insurance, disability insurance and long-term care insurance.

 

These are big deals as our kiddos grow up, get married, and become responsible for their own families someday. Obama has made it illegal for health insurance companies to discriminate against any preexisting conditions or genetic factors, but we have had that law here in MA for a long time.

 

Google invested many millions into 23andme and may in fact own a good percentage of the company. Any information downloaded onto a computer is at risk for hacking. All I'm getting at is that this is a slippery slope and there are so many unknown factors.

 

I think its very clever to use alternative addresses,ect to try protect their identities.

 

We are considering having this testing done, I am still weighing the surrounding concerns before we do.

 

I don't see how these type of insurances can get specific patient records written permission. So even though life insurance is not prohibited from considering genetic data. Wouldn't it be illegal for them to obtain specific patient records? Might be worth more money filing a law suit if that happened. Also wouldn't disability insurance and long-term care insurance be an oxymoron? I would think that identifying genetic problems actually strengthen any arguments for. I don't see a problem with having genetic data available for research as long as there is no whom it cam from attached to it.

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Mayzoo, I copied this from the document

 

The law does not cover life insurance, disability insurance and long-term care insurance.

 

These are big deals as our kiddos grow up, get married, and become responsible for their own families someday. Obama has made it illegal for health insurance companies to discriminate against any preexisting conditions or genetic factors, but we have had that law here in MA for a long time.

 

Google invested many millions into 23andme and may in fact own a good percentage of the company. Any information downloaded onto a computer is at risk for hacking. All I'm getting at is that this is a slippery slope and there are so many unknown factors.

 

I think its very clever to use alternative addresses,ect to try protect their identities.

 

We are considering having this testing done, I am still weighing the surrounding concerns before we do.

 

I don't see how these type of insurances can get specific patient records written permission. So even though life insurance is not prohibited from considering genetic data. Wouldn't it be illegal for them to obtain specific patient records? Might be worth more money filing a law suit if that happened. Also wouldn't disability insurance and long-term care insurance be an oxymoron? I would think that identifying genetic problems actually strengthen any arguments for. I don't see a problem with having genetic data available for research as long as there is no whom it cam from attached to it.

 

My concerns are not so much geared towards today's laws, my concerns are for what I foresee the laws being in 10 + years. Right now, yes they have to have our permission to get our results. In the future, I do not believe they will need our permission.

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4nikki, when you apply for insurance you have to give permission for them to audit all if your medical records. So yes, you do need to authorize.

 

This is not a reason not to get the info but rather a conversation to stimulate thought about the surrounding issues at hand. I find it all very interesting.

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