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Published online 13 November 2007 | Nature | doi:10.1038/news.2007.238
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Researchers complain of privacy rules
Health privacy rule is 'impeding research'.
Biomedical research in the United States has suffered substantial adverse effects from a rule on patient privacy introduced in 2003, according to concerned scientists who conducted a survey on the subject.
"We discovered delays, excess cost, and possible lack of undertaking some research projects," says Roberta Ness, chair of the Department of Epidemiology at the University of Pittsburgh in Pennsylvania, and lead researcher behind the survey.
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1. It is not only about HIPPA paper work, but it also should be criminally investigated into what is being done through governmental and industrial networks to chase certain individuals as human laboratory animals. 2. The medicine community OWEs to the humanity to thoroughly examine the success rates and efficiencies of those numerous epidemiological surveys that had been done prior to HIPPA regulations. How many surveys have been either meaningless or fabricated, and how many survey results are actually being held up after 10 years later? How many surveys have blatantly violated human rights? 3. Are the medical and phamacological communites in fact qualified to do the research? What do you think is the reason for so many frauds in stem cells and cloning where opportunities are available? Are the researchers intrinsically unqualified for their research? 4. Does anyone remember Hwang Woo Suk scandal? Most notably started with Hwang Woo Suk et al, Science 2004? Let's look at an articel in Nature in the same year in 2004. NATURE | VOL 428 | 22 APRIL 2004, titled "Birth of Parthenogenetic mice that can develop to adulthood" by authors in Tokyo University, Japan and Seoul National University, Korea and a couple of bio venture companies. I have been trying to contact the authors to see if "kaguya", parthenogenetically born normally and grown normally to reproduce offsprings by knocking off 13 kb H19 gene in one of the oocytes in the only TONT (two oocytes nuclear transfer) reported, has birth certifates for its TONTness and it was reproduced since. I would like to encourage the authors to offer kind answers here. If the authors managed to produce TONTs -- two were born healthy and one was sacrificed for testings, it reads -- by manipulating the only and then best-known gene Igf2-H19 system to successfully reprogram the "two-oocyte" system so that one would behave as if it had been from a paternal origin, then Igf2-H19 is a holy grail for the reprogramming for the mice nuclear transferred embryos. There are so many imprinted genes some of which are known in mice to be methylated before H19, but somehow maneuvering H19 only was sufficient to reorganize smoothly everything. The paper does NOT even mention a word of the epigenetic significance of H19. The problem is that if H19 does not have the holy grail status for TONT, then the paper is an obvious suspect. It may not be earth-shaking but it certainly is mammal-kingdom-shaking, if it is correct. Thus, it is an obvious fraud if it is not a Nobel Prize worth discovery of the magic status of H19. 5. The behavior of the so-called scientists with so many frauds and dubious behaviors around publication journals targetting the bioventures and stock prices and the government officials of certain countries shamelessly arranging and protecting the frauds with national intelligent services and Ministries more than sufficiently reassure us of the wickedness of people in general. The more means they have, the more ably wicked and vicious they are. 6. We need explanations. We need overhauling for the wrong-doings done under the name of research.
As for preeclampsia, What must have been the reason why the Universtiy of Pittsburgh could not get help from the Preeclampsis foundation? Suppose that the hypertension is due to the obvious increase in pregnancy related hormones, which must be. 1. What are the epidemologists trying to find out? Which age, which ethnics, and which income females with which age, which ethnics, and which income males are most prone to it? 2. Hypertension is a well-known problem with aging women with hormonal changes. So, what are known about the effects of excessive (compared to the normal before the pregnancy) hormones and potentially immune reactions against the "parasitic" new growth before they have to start gathering data whose procedures may be intrusive physiologically and in other aspects? 3. Why is it that the reduction of the number of people who are willing to participate in the data gathering after they are fully informed should be considered an impedance with research? 4. Why is 2.5 volunteers per week considered too small? That is 125 per year. Imagine following them carefully with studies of mother's genome, fetuses' genome from cells floating in mother's blood stream and measurements of the suspected hormones, antibodies, and other proteins, ions, sugars, and the usual septics, etc. It seems that it would be an enormous undertake with more than sufficient data. Would Roberta Ness kindly expain what she is trying to accomplish so that she is claiming that 2.5/week is too small? And, that is claimed as a problem due to privacy? What is her institution trying to do for the patients? If I were one candidate, I will definitely make sure to get the signature that none of the research results shall be filed for patents by the particular insititute, individuals, and any others either in the US or anywhere else.