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  • States trying to ban genetic testing

    California and New York have sent letters to about 13 DNA testing companies ordering them to stop offering genetic tests to its residents. decode me is one of the companies. They claim you have to be a medically liscensed lab and tests can only be ordered by a physician. Completely infuriariating. For now, they claim that genealogy and paternity tests are still ok - but companies like decode me that offer genealogy along with other info are still in the ban. And since full genomic mtdna contains medical info, will it really be far behind?

    not sure if this link to the new york times article of 2 days ago will work:
    http://www.nytimes.com/2008/06/26/bu...X0eI8AhVHGf/Lw

    it's called "gene testing questioned by regulators"

  • #2
    Originally posted by penguin
    California and New York have sent letters to about 13 DNA testing companies ordering them to stop offering genetic tests to its residents. decode me is one of the companies. They claim you have to be a medically liscensed lab and tests can only be ordered by a physician. Completely infuriariating. For now, they claim that genealogy and paternity tests are still ok - but companies like decode me that offer genealogy along with other info are still in the ban. And since full genomic mtdna contains medical info, will it really be far behind?

    not sure if this link to the new york times article of 2 days ago will work:
    http://www.nytimes.com/2008/06/26/bu...X0eI8AhVHGf/Lw

    it's called "gene testing questioned by regulators"
    As a Ph.D. who must comply with federal human subjects research guidelines in order to conduct non-invasive social science research, I completely agree with this action as it pertains to testing that can have severe medical implications for its participants. There is potential danger in having people discover to what medical conditions they *might* or *might not* have a genetic predisposition without the personal, expert guidance of a medical professional to help them understand the results. Left on their own, people may misinterpret the results as meaning that they will definitely develop a particular disease - or that they definitely won't - either misinterpretation could affect the medical and life-style choices that they make. Others may simply not be able to psychologically and emotionally handle the results in a reasoned way. Obviously, I'm all for genetic testing vis-a-vis genealogical research, but I believe that DNA testing companies should be held accountable for the medical implications of the testing that they offer to customers.
    Last edited by vinnie; 27th June 2008, 09:05 AM.

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    • #3
      Originally posted by vinnie
      As a Ph.D. who must comply with federal human subjects research guidelines in order to conduct non-invasive social science research, I completely agree with this action as it pertains to testing that can have severe medical implications for its participants. There is potential danger in having people discover to what medical conditions they *might* or *might not* have a genetic predisposition without the personal, expert guidance of a medical professional to help them understand the results.
      Actually (as a physician), I've been quite favorably impressed by the way deCODEme and 23andMe present the concept of relative risk in their "Gene Profile" or "Gene Journal" interpretive reports. They also offer lots of background information, additional resources, and referrals to genetic counselors. The demos at those two webs sites are a good way for people to gauge their own desire to know the kind of information the genome scans offer (which is less definitive than many might think initially). I don't think a physician's order should be required.

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      • #4
        In order to understand how this information could easily be interperted by the "novice" user, one only needs to read a few of the "off the wall" postings on these boards...

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        • #5
          Vinnie- I too am a Ph.D who does research and has to get approval from the IRB for all my research studies. So those qualifications clearly don't predict what side of this issue one will take.

          The days of Marcus Welby, doctor is God, protector, and friend, are gone. Especially now, people must be proactive about their own health. Studies keep showing that the more proactive people are, the better the outcome for mortality and health. Yet some folk, who think they are smarter than everyone else, or think they have to protect others, or think other people cannot be trusted to make decisions for themselves, or have a misguided desire to protect what they see as their own hard-won turf, keep putting obstacles in the way of people being proactive.

          You can't patronize people. YOu can't protect them from knowledge. You give them info and have to assume people will decide what's best for themsleves. For some, it will mean placing things 100% in the hands of a professional, for others 0%, and for many somewhere in between.

          Other countries don't patronize and assume the public are fragile idiots the way the US does. If you look at British or Australian health websites for instance they are much more "tell it like it is" and just give you the info, science and all. American medical sites say things like "ask your phsycian" or "your physician can run tests to check you for that" where as a British website will just tell you what the tests are!

          Indeed the US big brother nonsense contributes to people become closer to the very expectation of them. If you don't give people complex info, they never learn how to use complex info in a beneificial way.

          And what a slippery slope. Why stop with medicine? Why not ban geneaology testing? AFter all, someone could discover that way they are really adopted and didn't know it. Or there was infedility in their line and they are not really a "smith" after all. By your logic, shouldn't we protect people from possibly discovering such truths that could be harmful and cause them distress? Or protect them from genealogy data they can't fully understand and might misinterpret since they don't have an advanced degree in genetics? Why is it any different?
          Last edited by penguin; 27th June 2008, 01:38 PM.

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          • #6
            This really upsets me!

            If people want to profile their DNA, and get a clue as to what they contain in themselves, knowing before hand that these mutations they might have, may or may not reveal a hidden health hazard as stated by these companies, up front, it should be up to the individual not the government, to chose to do the testing or not. Yes I understand that there will be as many interpetations as there are people, but from my point of view, and it is my point of view, to be fore-warned is to be fore-armed. Also if the possibility is there to change a life style to a better oneself to ward off such that could be a hazard, is a good idea for a life choice, and a healthy state of mind, and body.

            To do DNA testing in the first place to try to understand where we may have come from is our choice also. What we do with the knowledge is our own business too.

            Science is growing in leaps and bounds in genetic research,we've all seen this in just a few short years of this forum. The possibilities are endless! I am for finding the mutations that can cause organ degeneration, and illness, fixing them with the proper proteins,....saving the government billions of dollars of health-care costs. No people will not live forever. Maybe we will find a distant cousin. Or, maybe ....we can really do something, for our own benefit. And the government has no right to slap the hand of those who want to educate the people who want to learn and... at a cost that is becoming more affordable!

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            • #7
              ulterior motive in NY & CA?

              A cynical thought just struck me. New York & California may be using the medical grounds for a hidden political agenda. The bottom line would be, according to my train of thought: the melting pot "E PLUREBUS UNEM (or however it is spelled) versus multiculturalism (Libertarian?).

              I better not get more into politics with this one.
              Last edited by PDHOTLEN; 27th June 2008, 08:06 PM.

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              • #8
                If there is a move underway to remedy a problem which does not yet exist, it is entirely possible that the motivation is derived from financial interests. I would suspect that there has been some strong lobbying occurring on the part of the physicians who are not receiving any compensation for the testing.

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                • #9
                  As a Libertarian, I can say that the Libertarian Party wants to keep the government out of such decisions. If a person wants to get his DNA tested & a company offers to do this, that should be between the person & the company.

                  Libertarians also maintain that if the company defrauds the customer, the matter should be taken up in a civil lawsuit; NOT in the form of some arbitrary regulation.

                  Timothy Peterman

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                  • #10
                    rent a P.O.Box in Canada or Mexico

                    If it comes to being forbidden to have one's DNA analyzed by a private testing company, then one could rent a post office box across the border. But get a passport first. This is all gettting rediculous.

                    R1s1* & U5b2

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                    • #11
                      Interesting topic

                      Wow I didn't know there were so many forum members with PhDs
                      BTW, I don't have one.
                      I looked at the link within the NY Times link that listed the 13 companies.
                      http://www.cdph.ca.gov/HealthInfo/ne...LandingPg.aspx
                      I recognize only 2 of them. In a way this is free publicity for all those companies. Maybe there will be a run on new orders from the other 48 states before their states ban it too?
                      I do think there should be some sort of regulation. I think the dna people are handing over for testing and the results should be private. That one of the people involved in one dna company is married to a Google co-founder has me wondering....in the distant future... will I be able to 'google' someones dna?
                      To some extent that has already started and is already being done with Sorensons, where you can see peoples name and family tree and mtdna.

                      I don't think it should be by doctors orders. People should be able to continue ordering the tests they want, on their own.
                      What I worry about is privacy and security and confidentiality. I can't afford any of those tests anyway.
                      I feel that if people want to order these tests on their own, without a doctor, then they should have that right. If the complaints are from consumers, and not from doctors, then it should be looked into. I see no harm in requiring that labs be licensed. I assumed they already were licensed.

                      What's next? Are dentists going to make the states ban children from pulling out their own loose baby teeth? lol
                      Last edited by rainbow; 28th June 2008, 03:38 AM.

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                      • #12
                        Originally posted by penguin

                        not sure if this link to the new york times article of 2 days ago will work:
                        http://www.nytimes.com/2008/06/26/bu...X0eI8AhVHGf/Lw
                        At the bottom of that page is a link about the declining birthrate in Europe and one town mayor in Italy is paying women to have babies and raise them in that town.
                        http://www.nytimes.com/2008/06/29/ma...29Birth-t.html

                        "A Dying Breed? As the birthrate in European countries drops well below the "replacement rate" - that is, an average of 2.1 children born to every woman - the declining population will first be felt in the playgrounds. "
                        Last edited by rainbow; 28th June 2008, 03:59 AM.

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                        • #13
                          GIs' contributions

                          RE: the link above about crash in birthrates.

                          After WWII & during the Cold War, American GIs did a great job of raising the birth rates of occupied countries. Now that we're not there anymore, or at least in any significant numbers, those countries are suffering a shortage of babies. hmmm.

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                          • #14
                            Notice the key thing is that a doctor must be present for ALL of the testing.

                            Right there, that's the proof that this is financially motivated.

                            They want a piece of the growing pie.

                            To be honest, this infuriates me for two reasons (1) that i'm a Libertarian, and I believe the details of that have already been explained and (2) all this is going to do is set prices for the medical "rough guesses" (which is all companies like 23andme and decodeme are doing and can do) through the roof, which they were already high to begin with. You know they are going to comply to keep their customer base, and there's only one way to really do that (hiring the doctors).

                            There really is no true need to have a M.D. after your name to do such a routine test procedure (I could see a desire to have maybe ONE person on staff, sort of like a medical-legal adviser to assess what they should word things like in their results), so the motivation should be clear as day.

                            I do wish I had the money to do their type of test now, since I definitely know it's going to be $1500 per test by the time they sort all of this out...

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                            • #15
                              Originally posted by FredSpringer
                              If there is a move underway to remedy a problem which does not yet exist, it is entirely possible that the motivation is derived from financial interests. I would suspect that there has been some strong lobbying occurring on the part of the physicians who are not receiving any compensation for the testing.
                              I think you hit the nail right on the head there. Lobbying, lobbying, and more lobbying. That's what it's all about. I believe they want to get in on all of the money that is being made. But this is our DNA! It has nothing to do with them! They are behind the curve on this.

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