Comments on: Warts and all http://genomeboy.com/2007/09/14/warts-and-all/ Thu, 28 Aug 2008 05:43:50 +0000 http://wordpress.org/?v=2.2.1 By: The Genetic Genealogist - » What’s on the Web? http://genomeboy.com/2007/09/14/warts-and-all/#comment-52 The Genetic Genealogist - » What’s on the Web? Sat, 15 Sep 2007 17:06:41 +0000 http://genomeboy.com/2007/09/14/warts-and-all/#comment-52 [...] Misha Angrist wrote about the implications of personal genome sequencing in “Warts and all.” [...] […] Misha Angrist wrote about the implications of personal genome sequencing in “Warts and all.” […]

]]> By: misha http://genomeboy.com/2007/09/14/warts-and-all/#comment-51 misha Sat, 15 Sep 2007 00:50:14 +0000 http://genomeboy.com/2007/09/14/warts-and-all/#comment-51 Thanks, all, for your thoughtful comments. Ignoscient, you're absolutely right about LTC insurance. As I noted in an earlier post, when I told my primary care doc I was getting my genome sequenced, she advised me to load up on LTC and disability. I haven't, probably more out of laziness or blind optimism rather than moral qualms. Roger, I admire your attitude. And I don't know what a microdeath is, but I'm thinking there's a heavy metal song there waiting to be written... Thanks, all, for your thoughtful comments.

Ignoscient, you’re absolutely right about LTC insurance. As I noted in an earlier post, when I told my primary care doc I was getting my genome sequenced, she advised me to load up on LTC and disability. I haven’t, probably more out of laziness or blind optimism rather than moral qualms.

Roger, I admire your attitude. And I don’t know what a microdeath is, but I’m thinking there’s a heavy metal song there waiting to be written…

]]> By: Steven Murphy MD http://genomeboy.com/2007/09/14/warts-and-all/#comment-50 Steven Murphy MD Fri, 14 Sep 2007 23:09:48 +0000 http://genomeboy.com/2007/09/14/warts-and-all/#comment-50 Is it the healthcare professional's duty to inform? It is. I wonder if the law will spare the physician if the patient "opts out" of knowing the results. If you take an HIV test we give informed consent which states that you wish to know the results.... The problem is that Hsien is right. These are tiny increased risks and how can we tell you all of them? We need a continually updated genome stratification risk. -Steve www.thegenesherpa.blogspot.com Is it the healthcare professional’s duty to inform? It is. I wonder if the law will spare the physician if the patient “opts out” of knowing the results. If you take an HIV test we give informed consent which states that you wish to know the results…. The problem is that Hsien is right. These are tiny increased risks and how can we tell you all of them? We need a continually updated genome stratification risk.
-Steve
www.thegenesherpa.blogspot.com

]]> By: Berci Meskó http://genomeboy.com/2007/09/14/warts-and-all/#comment-49 Berci Meskó Fri, 14 Sep 2007 20:38:27 +0000 http://genomeboy.com/2007/09/14/warts-and-all/#comment-49 In my opinion, the solution will be the freedom of choice. We'll ask the patient to decide what kind of diseases; increased risks he's interested in. We'll let him know what kind of diseases we haven't got any kind of cure or treatment for. Personalized genetics is going to be a service so the patient must have the freedom, the possibility to choose which part of his "genetic/health fate" he wants to know about... In my opinion, the solution will be the freedom of choice. We’ll ask the patient to decide what kind of diseases; increased risks he’s interested in. We’ll let him know what kind of diseases we haven’t got any kind of cure or treatment for. Personalized genetics is going to be a service so the patient must have the freedom, the possibility to choose which part of his “genetic/health fate” he wants to know about…

]]> By: Roger Kautz http://genomeboy.com/2007/09/14/warts-and-all/#comment-48 Roger Kautz Fri, 14 Sep 2007 20:05:53 +0000 http://genomeboy.com/2007/09/14/warts-and-all/#comment-48 I think "don't worry about it" is a healthy attitude, but I would still rather know. To talk in terms of "100x higher risk" of a rare disease is alarmist BS. What is the absolute risk? What is the chance this will be what I die from? The odds of being hit by lightning are about 0.5 in 1 million. That's half a "microdeath". In laboratory safety training I recall being told there's a microdeath of risk in driving 20 miles in traffic, flying 2000 miles on a commercial airliner, smoking four cigarettes, or eating 40 tablespoons of peanut butter. Cancer rates rise exponentially with age no matter how well you take care of yourself. You only live 30,000 days if you are lucky. I do want to know how to recognize diseases I might encounter, like Lyme disease or Rocky Mtn. fever from hiking. You might say those can be nipped in the bud, so knowledge is prevention. What if I knew I was going to die in a year? No time to waste in anguish or even financial planning; I am now immune to anything that takes more than a year to kill me. Even a skydiving or climbing accident wouldn't seem so tragic. I think “don’t worry about it” is a healthy attitude, but I would still rather know.

To talk in terms of “100x higher risk” of a rare disease is alarmist BS. What is the absolute risk? What is the chance this will be what I die from? The odds of being hit by lightning are about 0.5 in 1 million. That’s half a “microdeath”. In laboratory safety training I recall being told there’s a microdeath of risk in driving 20 miles in traffic, flying 2000 miles on a commercial airliner, smoking four cigarettes, or eating 40 tablespoons of peanut butter. Cancer rates rise exponentially with age no matter how well you take care of yourself. You only live 30,000 days if you are lucky.

I do want to know how to recognize diseases I might encounter, like Lyme disease or Rocky Mtn. fever from hiking. You might say those can be nipped in the bud, so knowledge is prevention. What if I knew I was going to die in a year? No time to waste in anguish or even financial planning; I am now immune to anything that takes more than a year to kill me. Even a skydiving or climbing accident wouldn’t seem so tragic.

]]> By: ignoscient http://genomeboy.com/2007/09/14/warts-and-all/#comment-47 ignoscient Fri, 14 Sep 2007 16:35:25 +0000 http://genomeboy.com/2007/09/14/warts-and-all/#comment-47 You raise an important concern with ApoE, but it's not the case that availability of treatment is the only consideration to make when considering getting one's genetic information. Even if one cannot prevent a disease, there are other preparations that can be made. Long-term care insurance is quite expensive and is more difficult to get--if not impossible--after the onset of a condition that necessitates this kind of care. (My dad had a massive stroke and didn't have LTC, and now it's impossible to get LTC because the inability to use the left side of his body is now a "preexisting condition.") Knowing one's ApoE status might be helpful when making a decision to purchase LTC earlier on in life. Sharing this information with others or making it public is another question, of course...would LTC providers consider the e4/e4 genotype a "preexisting condition" and thus uninsurable? You raise an important concern with ApoE, but it’s not the case that availability of treatment is the only consideration to make when considering getting one’s genetic information. Even if one cannot prevent a disease, there are other preparations that can be made.

Long-term care insurance is quite expensive and is more difficult to get–if not impossible–after the onset of a condition that necessitates this kind of care. (My dad had a massive stroke and didn’t have LTC, and now it’s impossible to get LTC because the inability to use the left side of his body is now a “preexisting condition.”)

Knowing one’s ApoE status might be helpful when making a decision to purchase LTC earlier on in life.

Sharing this information with others or making it public is another question, of course…would LTC providers consider the e4/e4 genotype a “preexisting condition” and thus uninsurable?

]]> By: Hsien Lei http://genomeboy.com/2007/09/14/warts-and-all/#comment-45 Hsien Lei Fri, 14 Sep 2007 09:59:58 +0000 http://genomeboy.com/2007/09/14/warts-and-all/#comment-45 Oops. That should have been DECREASE our risk. I don't have an early death wish. :P Oops. That should have been DECREASE our risk. I don’t have an early death wish. :P

]]> By: Hsien Lei http://genomeboy.com/2007/09/14/warts-and-all/#comment-44 Hsien Lei Fri, 14 Sep 2007 09:59:28 +0000 http://genomeboy.com/2007/09/14/warts-and-all/#comment-44 What say that most of the SNPs we have only increase risk by a teeny tiny little bit. It's the cumulative effect that increases risk by several fold. AND, we're not just looking for treatments here. We're looking for prevention. What can we do to increase our risk EVEN IF we have a particular genetic variant associated with the disease? Lower the amount of fat in our meals (no more foie grois if you're worried about Alzheimer's!), exercise more, quit smoking...all the things we know we should do but don't really bother until something cold and hard like a list of SNP numbers hits us upside the head. What say that most of the SNPs we have only increase risk by a teeny tiny little bit. It’s the cumulative effect that increases risk by several fold. AND, we’re not just looking for treatments here. We’re looking for prevention. What can we do to increase our risk EVEN IF we have a particular genetic variant associated with the disease? Lower the amount of fat in our meals (no more foie grois if you’re worried about Alzheimer’s!), exercise more, quit smoking…all the things we know we should do but don’t really bother until something cold and hard like a list of SNP numbers hits us upside the head.

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