"Today, 23andMe announced what Forbes reports is only the first of ten deals with big biotech companies: Genentech will pay up to $60 million for access to 23andMe's data to study Parkinson's. You think 23andMe was about selling fun DNA spit tests for $99 a pop? Nope, it's been about selling your data all along."
Posted by Theresa (Member # 421) on :
I am waiting for a kit on my dr.'s Recommendation. what is the worse thing that could happen with your dna. Theresa
Posted by Lymetoo (Member # 743) on :
I know. I am planning to do the test sometime in the next few months.
Posted by Phoiph (Member # 41238) on :
It comes as no surprise...
There are other concerns, for example, the possibility of health insurance companies getting their hands on the information and discriminating based on genetic profiles (i.e., risks for certain diseases/conditions)...
Not to mention what the "powers that be" could do with the information, with or without consent.
I personally would not want my DNA information in that database...
Posted by Robin123 (Member # 9197) on :
And yet that information is showing my doctor exactly where my methylation cycles are blocked, as in which enzymes are defective. So I think I would still vote to do it, since I am benefitting from it.
Posted by Keebler (Member # 12673) on :
- "Instead, it's always been about enticing customers to hand over their DNA sequences along with details of their lives in a questionnaire to build a giant database . . ." (end quote)
Why not just NOT answer any personal questions?
they should be able to do the gene test with any questions being answered other than perhaps gender and approx. age range, it would seem to me.
Does anyone know if you can do the genetic test and just not take part in any questionnaire whatsoever, at all?
I also assume they do not ask for a social security number (do they?) - as that is certainly not something they would need, either. -
Posted by Phoiph (Member # 41238) on :
A person just needs be aware of the risks of disclosure and decide for themselves if the benefits outweigh the risks.
Even if you don't answer questionnaires or consent to release of information, you are still submitting your name, mailing address, credit card, IP address (to which "cookies" are attached and log files are created), phone number and email address, which is plenty of information to identify you and connect you with your genetic profile.
Once you submit the information, there is no removing it from the database.
Also, any information you give is subject to court subpoena, and at risk of being sold to 3rd parties or "stolen" in a security breach and used however desired.
Here is the disclosure of risk from their website:
There are some potential risks to participating in the 23andMe Research study, as described below.
-Some survey questions may make you or your family members uncomfortable.
-Your genetic data, survey responses, and/or personally identifying information may be stolen in the event of a security breach. In the event of such a breach, if your data are associated with your identity, they may be made public or released to insurance companies, which could have a negative effect on your ability to obtain insurance coverage. In addition, if you or a family member has genetic data linked to your name or your family member's name in a public database, someone who has access to your 23andMe genetic data might be able to link that data to your name or your family member's name through the publicly available genetic data. Although 23andMe cannot provide a 100% guarantee that your data will be safe, 23andMe has strong policies and procedures in place to minimize the possibility of a breach.
-When 23andMe researchers publish results from this ongoing study, they may include your Genetic & Self-Reported Information but only as part of a summary across enough people to minimize the chance that your personal information will be exposed. Identification of your individual-level data from those summaries would be extremely difficult, but it is possible that a third party that has obtained some of your genetic data could compare that partial data to the published results and infer some of your other personal information.
-As with any online service, if you disclose your account password to others, they may be able to access your account and your Genetic & Self-Reported Information.
-There may be additional risks to participation that are currently unforeseeable
Please be aware that under certain circumstances personal information may be subject to disclosure pursuant to judicial or other government subpoenas, warrants, or orders. In the event that we are legally compelled to disclose your personal information to a third party, we will notify you with the contact information you have provided to us in advance unless doing so would violate the law or a court order. Posted by Theresa (Member # 421) on :
I have an appointment tomorow with the person who will be checking and handling all this mutation, methylation stuff. He was recommended to me in order to handle my supplements. I will be asking all these questions. I also think about the fact that this information can also be used in discovering new cures for diseases. This info must be very important to biotechs.
Posted by surprise (Member # 34987) on :
It doesn't matter to me anymore. I am not under the illusion that there is privacy anymore.
Everything we buy is recorded/ tracked. All medical records, prescriptions we ever took, can be gotten if 'someone' wants it.
So, maybe it will be for 'good'. I'd like to think 'good' eventually wins.
Posted by lymenotlite (Member # 33166) on :
I think I'll wait for the home test kits. Might be a long wait.
Posted by LisaK (Member # 41384) on :
I don't trust any company any more. or dr.
*****
Posted by SacredHeart (Member # 44733) on :
What is this for? To see if you have a genetic mutation?
Posted by Phoiph (Member # 41238) on :
Surprise...
I would agree, except the difference I see in this case, is that the information is combined in a huge database that makes it very attractive and valuable to certain entities as a whole (e.g., insurance companies, drug manufacturers, etc.).
Unfortunately, with the bio-techs, it seems to be more about drug development than "curing" diseases, as that is where the profits lie.
That said, there are also benefits that may outweigh risks for an individual, but I think people should be aware of the privacy risks and implications of giving up their most personal information (and possibly that of their relatives) so they can make an informed decision.
It is also possible that some of these tests could be ordered privately through their practitioner, which may avoid being part of the database.
Posted by faithful777 (Member # 22872) on :
You can opt out of them sharing your dna.
Posted by chootik (Member # 11221) on :
Yes you can opt out of sharing your DNA. In the event they have a "security breach" and your data is stolen, then I guess you'll be out of luck.
Posted by Robin123 (Member # 9197) on :
Can't speak for any security breach - if that happens, then any data is usually obtained, anywhere, but I did get to hear a 23andme employee at UCSF speak this week to grad students in pharm/genetics and he said no personal data gets out, only aggregated data from testing.
And they are working with the FDA and hope to have their medical info interp part back online in the future.
Posted by Keebler (Member # 12673) on :
- Anonymous (as stated by their literature) & "aggregated data from testing" could actually be a good & positive action if others can help to correct health issues from that information.
What's to say that ANY medical testing has zero risk of "hackers" for whatever reason?
I figure if I can gain information that will help me live a more healthful life, then I can be more resilient if bad stuff happens, even if cybercrime. -
Posted by TNT (Member # 42349) on :
Did the employee give any idea how long it may be until the medical analysis is once again given out? I read somewhere that they reinstated it for Canadian users.
Posted by Lymetoo (Member # 743) on :
There are at least two other interpretation options. I don't remember the names right now... but it's easy to get the interpretation.
Hackers will be all over our computerized health care system very soon... if not already.
Posted by beths (Member # 18864) on :
You can also give a fake name!
Posted by Robin123 (Member # 9197) on :
TNT, they said it's a tedious, slow process, no telling when, but they're working towards reinstatement of the medical interp part.
Interesting - so Canada doesn't nave an equivalent FDA operation going on.
May I say, geneticgenie did a good job with my results. He said there are several companies offering what geneticgenie is doing. I didn't get their names.
Posted by Lymetoo (Member # 743) on :
I think another is livewello ..
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Robin123:
Interesting - so Canada doesn't nave an equivalent FDA operation going on.
- Canada is lucky!!
Posted by TNT (Member # 42349) on :
Thanks, Robin.
I know of another company that is trying to work through FDA approval, and it must be a HUGE pain because the process is unbearably slow.
Unless, of course, you are a big pharmaceutical company with LOTS of money(they like that).
In that case, you can get done what you want much more quickly.
Posted by LisaK (Member # 41384) on :
Keebler said: "Why not just NOT answer any personal questions?
they should be able to do the gene test with any questions being answered other than perhaps gender and approx. age range, it would seem to me.
Does anyone know if you can do the genetic test and just not take part in any questionnaire whatsoever, at all?
I also assume they do not ask for a social security number (do they?) - as that is certainly not something they would need, either."
You are right. you don't need to put any personal info on there. I did not. I didn't answer any questions.
We shall see if they can figure things out.
and Keebler, no, they do not ask for your social security number.
Posted by Phoiph (Member # 41238) on :
Lisa K...
How do you order your test, and how do they get your information/results back to you?
Posted by LisaK (Member # 41384) on :
you order on line. I dont know how you get results. I guess I should find out! haha
_
Posted by Lymetoo (Member # 743) on :
I think they send it by email.
Posted by Treelady (Member # 23506) on :
You order the test kit and they mail it to you. It is a saliva sample that you provide and mail it back.
They email you a link to your results and you have unlimited access to your infomation that way including any new info from genetic studies that come to light.
They request that you take part in surveys....for example; do you sleep on your side or have blond hair. They then link those answers to your genetic makeup.
They can then say that 55% of blonds with certain genetic markers sleep on their side after they get enough people participating.
They never make you answer any surveys but use your answers to compile their own statistics. I thought it was really interesting.
If you want info on more specific means of detoxing you can download your data into other websites that break it down. I forget the name of the one that I used but it is more specific than 23andme
Posted by Phoiph (Member # 41238) on :
Just to reiterate a point...even if you don't answer any "personal" questions/surveys, you are still divulging your personal information in the form of email address, IP address, mailing address, and through any form of payment you make...in direct connection with your DNA.
Again, the business plan of these companies is not to make their profits by selling inexpensive test kits, but by selling your data.
I think it is important that people understand this and weigh the benefits and risks accordingly. Perhaps the testing they seek could instead be ordered privately through their practitioner, which may avoid their results becoming part of a large database...
Posted by A.G. (Member # 44713) on :
The ins cos, hospital, govt, whomever have the info anytime you give blood...IF they wanted it. It didn't take 23andme to make that happen.
I don't care. I just want to focus on getting well.