I just read that Venus Williams is suffering from a disease called Sjogren's syndrome. but still won the Dubai tennis tournament. I looked upSjogren's syndrome on Wikipedia. It is a difficult disease to diagnose and treat. It doesn't sound like we know the cause, and there is apparently no cure. Because one of the symptoms is fatigue, I also looked up Chronic Fatigue Syndrome, and Fibromyalgia which in some ways seems similar. Apparently all three of these diseases are more prevalent in women, and we don't know the cause or have a cure. There are some common symptoms among the three syndromes, but there are enough differences to allow them to be classified as separate diseases. I wonder if there are other syndromes that are also similar. According to Wikipedia A syndrome: In medicine and psychology, a less specific definition of syndrome is used, which describes a collection of symptoms and findings without necessarily tying them to a single identifiable pathogenesis. Is there a common cause for this type of syndrome? Is it genetic? Or is it a viral infection? Or both: for example a viral infection triggers an immune response which becomes self-destructive due to a genetic mutation?
From searching on the internet, it appears that each of these syndromes have their own support organizations, which consists of other patients sharing with each other. Each also appears to have fund-raising to help with patients and research. The research seems to be fragmented, and studying the unique properties and symptoms of each syndrome. It doesn't appear that there is any organization, including NIH, or the equivalent in other countries, sponsoring research into the possible common cause, treatment or cure of these type of syndromes.
I wonder if it would make sense to map the DNA of individuals with these various syndromes and see if there are common genetic markers that indicate a possible contributing cause of the syndromes. If the FDA had continued to allow "23 and me" to collect specimens, maybe it would help. It seems to me that the world really does need an immense database of DNA to be able to identify unique differences that could contribute to causing rare syndromes such as this.
My thoughts concerning medical and health technology breakthroughs and public policies
Saturday, March 22, 2014
Wednesday, February 26, 2014
An excerpt from Michio Kaku's "The Future of the Mind" | MSNBC
An excerpt from Michio Kaku's "The Future of the Mind" | MSNBC:
Michio Kaku was on the Daily Show in Feb 2014 concerning the brain.
Michio Kaku was on the Daily Show in Feb 2014 concerning the brain.
An excerpt from Michio Kaku's "The Future of the Mind" | MSNBC
An excerpt from Michio Kaku's "The Future of the Mind" | MSNBC:
Michio Kaku was on the Daily Show in Feb 2014 concerning the brain.
Michio Kaku was on the Daily Show in Feb 2014 concerning the brain.
Tuesday, February 25, 2014
Stand against sitting disease: Expert offers ideas for moving more
It appears that we've all "gotta move" more -- maybe the increase in some of our diseases in the western world is caused by "sitting disease" --facilitated by television & computers
Stand against sitting disease: Expert offers ideas for moving more – USATODAY.com:
Also on Mayo Clinic web site:
http://www.mayoclinic.org/healthy-living/nutrition-and-healthy-eating/expert-blog/sitting-disease/bgp-20056238
Stand against sitting disease: Expert offers ideas for moving more – USATODAY.com:
Also on Mayo Clinic web site:
http://www.mayoclinic.org/healthy-living/nutrition-and-healthy-eating/expert-blog/sitting-disease/bgp-20056238
Tuesday, November 26, 2013
FDA halts sale of 23andMe DNA tests | UTSanDiego.com
According to this Union Tribune article: FDA halts sale of 23andMe DNA tests | UTSanDiego.com, (and NBC News) the FDA has stopped 23andMe from selling their personal DNA analysis "kits." (FDA Letter Posted on Internet) In this case, 23andMe could simply not report on some of the controversial findings and continue to do business. I'd bet that's what they'll do, until the more controversial findings are resolved. However, I think this is a major issue,and it is sort of at the center of a major junction of issues involving DNA testing. Issues may need to be resolved by legislation or court decisions. Those issues include moral, ethical, financial, and personal rights. The decision is also fascinating because it involves investments made by Google, and a recently highly successful San Diego company Illumina. Illumina makes the "chips" that are used in DNA testing, and the company's stock has had an immense run-up recently. 23AndMe was founded in 2006 in San Diego by Anne Wojcicki, Linda Avey, and Paul Cusenza. Wojciki married Google co-founder Sergey Brin, which is probably why Google has investment in the company. In 2008 Time magazine identified 23AndMe's testing as the best invention of the year.
When 23AndMe first started out, the FDA wasn't really interested. All of the sudden in 2010 they wanted definitive proof that all of the DNA testing is accurate. Why the sudden "change of heart?" Should the FDA even be involved with DNA testing? DNA testing could be considered to be similar to fortune telling. You give the fortune teller a lock of hair, and are told what might happen to you in the future. In this case, you spit in a bottle, send it in and are told the probabilities that you might be diagnosed with different diseases. Fortune telling isn't regulated by the FDA -- why should this? There is also some belief that there are rivalry between various doctors, jealousy, and issues of competition from other start-up companies who would like to throw stumbling blocks in front of the leader (23 and Me) so they can catch up. Should 23 and Me be forced to make public all of their DNA work and analysis that they use in making their assessments? If so, that gives away all of their expensive research, so that other companies can use it to compete directly with 23 And Me. Much of that sort of information is also complicated by the lack of ability to patent information about DNA markers, and the recent US Supreme Court decision.
Just a few years ago, the company charged about $400 and evaluated about 90 medical conditions. Now it only costs $99 and does many more (250) conditions. I'm sure the FDA expects the number of genetic markers evaluated to continue to increase, and the cost may even continue to fall. Possibly other companies, and companies in other countries will also begin to do genetic testing. At a $100 price, it would seem that it's within the price range that everyone would want to know. If the price continued to drop, I would think for sure that everyone would have DNA testing done for themselves and their children.
The FDA is apparently concerned about affects on "public health" -- which seems rather vague. I speculate that could mean:
1. FDA is concerned that people who are told they might be susceptible to certain diseases could request treatments or medications based upon that information, which could overload the US public health "system."
2. Some percentage of those treatments or medications may be unnecessary or harmful to patients
3. Patients who have knowledge gained from DNA testing will have an unfair advantage in buying life and health insurance. If a patient knows they have a high probability of being diagnosed with an "expensive" or fatal disease, they would, in effect, be cheating when they bought expensive insurance policies. Should they be required to disclose to insurance providers? Should insurance providers do their own testing?
4. There are also moral & ethical issues related to DNA testing. For example: Should a person disclose to a potential spouse their DNA test results if they know they are likely to encounter a serious medical condition?
I think it will be very interesting to see how these issues are resolved in the future. I wonder how other countries will react to the same situation. Could US Citizens go to another country to have their DNA tested? Could we send a bottle of spit to another country to have it tested outside of the FDA authority?
When 23AndMe first started out, the FDA wasn't really interested. All of the sudden in 2010 they wanted definitive proof that all of the DNA testing is accurate. Why the sudden "change of heart?" Should the FDA even be involved with DNA testing? DNA testing could be considered to be similar to fortune telling. You give the fortune teller a lock of hair, and are told what might happen to you in the future. In this case, you spit in a bottle, send it in and are told the probabilities that you might be diagnosed with different diseases. Fortune telling isn't regulated by the FDA -- why should this? There is also some belief that there are rivalry between various doctors, jealousy, and issues of competition from other start-up companies who would like to throw stumbling blocks in front of the leader (23 and Me) so they can catch up. Should 23 and Me be forced to make public all of their DNA work and analysis that they use in making their assessments? If so, that gives away all of their expensive research, so that other companies can use it to compete directly with 23 And Me. Much of that sort of information is also complicated by the lack of ability to patent information about DNA markers, and the recent US Supreme Court decision.
Just a few years ago, the company charged about $400 and evaluated about 90 medical conditions. Now it only costs $99 and does many more (250) conditions. I'm sure the FDA expects the number of genetic markers evaluated to continue to increase, and the cost may even continue to fall. Possibly other companies, and companies in other countries will also begin to do genetic testing. At a $100 price, it would seem that it's within the price range that everyone would want to know. If the price continued to drop, I would think for sure that everyone would have DNA testing done for themselves and their children.
The FDA is apparently concerned about affects on "public health" -- which seems rather vague. I speculate that could mean:
1. FDA is concerned that people who are told they might be susceptible to certain diseases could request treatments or medications based upon that information, which could overload the US public health "system."
2. Some percentage of those treatments or medications may be unnecessary or harmful to patients
3. Patients who have knowledge gained from DNA testing will have an unfair advantage in buying life and health insurance. If a patient knows they have a high probability of being diagnosed with an "expensive" or fatal disease, they would, in effect, be cheating when they bought expensive insurance policies. Should they be required to disclose to insurance providers? Should insurance providers do their own testing?
4. There are also moral & ethical issues related to DNA testing. For example: Should a person disclose to a potential spouse their DNA test results if they know they are likely to encounter a serious medical condition?
A Scientific American Forum Blog by Charles Seife says: "The genetic-testing company’s real goal is to hoard your personal data." He believes that the ultimate purpose of 23andMe is to collect the genetic information for a database. That database could become extremely valuable for genetic research, similar to Google's search database. From a public health perspective, I think the optimum situation would be to have a massive global database that contains everyone's family history of diseases, and everyone's DNA evaluations. That extremely valuable database could then be "mined" to determine the effect of the many DNA markers on disease, and most likely help in preventing the diseases. However, there would be major issues of privacy and security involved in such a database. Also, since the DNA testing is just in its infancy, there are probably lots of errors. So any such database would be "contaminated" by the errors.
I think it will be very interesting to see how these issues are resolved in the future. I wonder how other countries will react to the same situation. Could US Citizens go to another country to have their DNA tested? Could we send a bottle of spit to another country to have it tested outside of the FDA authority?
Monday, October 7, 2013
'Poop Pills' Could Replace Fecal Transplants of Gut Bacteria - D-brief | DiscoverMagazine.com
I always wondered if this would work --and much easier than the other "methods" of transplanting.
'Poop Pills' Could Replace Fecal Transplants of Gut Bacteria - D-brief | DiscoverMagazine.com:
'Poop Pills' Could Replace Fecal Transplants of Gut Bacteria - D-brief | DiscoverMagazine.com:
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