tag:blogger.com,1999:blog-8480427453110572235.post7590231070373140991..comments2009-05-15T07:40:40.104+10:00Danielhttp://www.blogger.com/profile/07276690118219000204noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-8480427453110572235.post-81533170621065135422009-05-15T07:40:00.000+10:002009-05-15T07:40:00.000+10:00I have been seeing a lot of info on this subject, but none of them including this page doesn't say anything how the companies are comparing the data. Does any one know how the data generated from Affymetrix snp 6.0 is being compared to or which database is being used and where that can be found? Appreciate comments.John Adamhttp://www.blogger.com/profile/11333975507160077318noreply@blogger.comtag:blogger.com,1999:blog-8480427453110572235.post-15358471626994340742008-07-01T11:42:00.000+10:002008-07-01T11:42:00.000+10:00Hugh, I'm asking these pointed questions to stimulate discussion. The issue of SNP profiling is an interesting one, because while it certainly has some medical implications, there are many applications which are non-medical. To me, this puts SNP profiling in a different category from DTC genetic tests used for the diagnosis of a medical condition. Some people who are discussing regulations haven't made this distinction due to what I think is a mistaken understanding of the technology. They're comparing it with the next closest thing they know of, which is DTC genetic testing. I'm wondering why someone with a clue doesn't point out to them that the two services are entirely different. I understand that information relating to disease risk is revealed and I understand the need for CLIA certification, validated methods, and protecting the consumer from false advertising, and I don't think anyone worth listening to is saying that there should be no regulation of the industry, simply that a doctor's order shouldn't be necessary, because much of the information imparted by SNP analysis is non-disease related, and a doctor wouldn't know how to interpret even the medically related stuff. Given that even Steve agrees with me on that last point, why is there such insistence on having a doctor's order?<BR/><BR/>It can't be to protect people from having adverse health events, because clearly knowing more about risk is protective, because knowing things about ancestry can be informative entirely aside from disease risk, and because a doctor wouldn't know what to do with the info anyways.<BR/><BR/>It can't be to protect people from getting scammed, because the things needed to achieve that, such as requiring the labs to be certified and use validated methods and not make false claims, can all be accomplished without a doctor's involvement. <BR/><BR/>It can't be, as erroneously claimed by the California regulators, to protect people from getting false information. SNPs aren't all that predictive right now, but the reputable companies aren't making claims beyond what's backed up by solid science(which, again, a GP won't know), so this could only be a valid reason if they had just targeted those who are making false claims, instead of everyone.<BR/><BR/>What is the reason for the insistence on having a doctor's order? Are they worried that they'll be exposed to malpractice claims if a patient presents them with risk information and they don't take action? Certainly the standards of care still apply, SNPs or no, so what's the problem there?<BR/><BR/>Like I said, I haven't heard a single person whom I'm convinced understands the technology argue the side of requiring a doctor's order. Let's be clear here: regulation is good for everyone, both the reputable, certified providers and consumers. The question therefore is not why should we have regulation, but why should a doctor's order be required?Mr. Gunnhttp://www.blogger.com/profile/17434342767819948877noreply@blogger.comtag:blogger.com,1999:blog-8480427453110572235.post-5366914209195754672008-07-01T10:26:00.000+10:002008-07-01T10:26:00.000+10:00Does it matter? The issue here is the regulation of genetic tests and their impact on pathology.Hughhttp://www.blogger.com/profile/07820529180034398416noreply@blogger.comtag:blogger.com,1999:blog-8480427453110572235.post-73942727656579495862008-07-01T02:19:00.000+10:002008-07-01T02:19:00.000+10:00Hugh - So leaving aside the idea that people should be able to know what's in their DNA <B>because it's <I>their</I> DNA</B>, would you consider analysis of even non-disease related traits to be practicing medicine?<BR/><BR/>Would you like to take a stab at answering the questions I posed in my earlier comment, or are you going to take the Gene Sherpa approach of simply ignoring everyone else and stating your position over and over hoping that you'll eventually wear others down.Mr. Gunnhttp://www.blogger.com/profile/17434342767819948877noreply@blogger.comtag:blogger.com,1999:blog-8480427453110572235.post-19576779876293333942008-06-30T15:55:00.000+10:002008-06-30T15:55:00.000+10:00The notion that SNP data is not medicine is disingenious. Obviously people are motivated to pay for these tests with the motivation of interpreting the health implications. There is no distinction between the two. These tests, like most medical tests should be ordered by, or on the advice of a doctor.Hughhttp://www.blogger.com/profile/07820529180034398416noreply@blogger.comtag:blogger.com,1999:blog-8480427453110572235.post-69768944025995489762008-06-28T03:26:00.000+10:002008-06-28T03:26:00.000+10:00I don't think anyone is saying there shouldn't be regulations, just that a doctor's referral shouldn't be a blanket requirement for everyone who wants to know what's in their DNA.<BR/><BR/>It remains unfortunate that Mr. Gene Sherpa lumps bad providers in with good, genetic tests for specific conditions in with SNP profiling, and equates data mining with the practice of medicine.<BR/><BR/>I don't believe for a second that he's actually got someone "on the inside" who's leaking information to him. That kind of bluster is simply typical of his style of communication, and it doesn't take but a second to find situations where his positions become nonsensical. If SNPs + data analysis = medicine, what is happening when one company provides only data and another company provides only analysis of that data in the context of other profiles?<BR/><BR/>Which one is the one "practicing medicine", the lab that simply operates the machine, or the website that simply crunches the data?<BR/><BR/>I don't harbor any enmity towards Mr. Gene Sherpa, but it's quite obvious that he's out of his league here, and it's even more irritating because he's not even interested in a discussion, but rather making these rather foolish ex cathedra pronouncements.Mr. Gunnhttp://www.blogger.com/profile/17434342767819948877noreply@blogger.comtag:blogger.com,1999:blog-8480427453110572235.post-59785095505225976092008-06-27T04:53:00.000+10:002008-06-27T04:53:00.000+10:00That's the problem,<BR/>The government sees all of these as the same. I don't think the ideal situation will emerge. I have been speaking to several on the inside......they are not about to let well capitalized comapnies tell them how to interpret the law...The more they (DTC companies) try to sell, the worse it'll be. <BR/><BR/>I just hope they can change their business model in order to comply with current laws. THey do have some great people there....I am sure there has got to be at least one redeemable soul at Gene Essence too.....maybe not that guy, but someone.....<BR/><BR/>-Steve<BR/>www.thegenesherpa.blogspot.com<BR/>p.s. I stand by my opinion<BR/>SNP data not medicine<BR/>SNP data PLUS interpretation of medical risk = Medicine (7 days a week, 356 days a year)Steve Murphy MDhttp://www.blogger.com/profile/11774190000307343476noreply@blogger.comtag:blogger.com,1999:blog-8480427453110572235.post-36445350297635164032008-06-27T01:34:00.000+10:002008-06-27T01:34:00.000+10:00Great picture...Mishahttp://www.blogger.com/profile/13749524464093822713noreply@blogger.com