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The first attempts to use a groundbreaking gene-editing technology in people will likely target patients with sickle cell disease, a crippling inherited disorder that in the U.S. predominantly strikes African-Americans.

That should be welcome news, after decades of sickle cell patients being neglected by the health care system, scientists, and drug companies. But the long and ugly history of unethical experimentation and mistreatment of black patients could make recruiting volunteers to try largely untested CRISPR therapies a tough sell.


“You can’t expect this population is just going to stick out their arm for an IV,” said Mary Brown, who heads the Sickle Cell Disease Foundation of California and has worked with patients for four decades. “There’s a lot of education that needs to be done. I don’t want to say hand-holding, but that’s what it is.”

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  • The difficulties in CRISPR may be of a different and more dangerous nature than in other biological procedures or technologies.
    Imagine an Alien group wanting to abuse or seize planet Earth, or simply, blunt on us some features they feel are dangerous to them, a type of ‘preventive attack’ such as that on Saddam Hussein, who had no ‘weapons of mass destruction’.
    Besides that a technology that is not expensive, requires no special facilities or means, and is of open sale, is very hard to control in its unfair use, if we use this, and don’t control it, the Alien may feel authorized to any use of similar technology they may possess, with inherent dangers to us.
    UFO watchers point the constant element in ‘abductions’ is the extraction of genetic, reproductive cells samples.
    Something to think about…

    • Watching too many movies these days huh?
      CRISPR is definitely a risky issue once well configured it can LITERALLY slice any set of genes together to form any string they want. Right now high school kids are allowed to fiddle with cursory projects and in fact, you can buy kits online to make up spliced critter sequences that glow in the dark and or change color
      I think like stem cells the universal scientific community will tightly regulate it as it develops
      Plus to get full structured humans is FAR more difficult than slicing out a tiny gene segment that we have determined to cause a disease
      Dr. Dave

  • The Tuskegee case has a not so known XIX century precedent, when Neisser, known for the bacteria genus wearing his surname: ‘Neisseria’, deliberately inoculated tenths of persons with syphilis, to test the vaccine of his invention, this triggering the first ever rules on experiments affecting human subjects, by the Prussian government

  • Rocky
    You should seriously reconsider posting your personal info on an open site like this
    Anything bad can happen
    As for clinical trials, the best way to find clinical trials is thru the US government site called there you can find every single approved trial going on at any time even ones that are closed
    Not sure what condition you are concerned about but if it is going on then the site has them listed
    You will in MOST cases need a sponsor to get into one meaning your personal physician will need to do the paperwork and pre-evaluation evaluation so as to waste the trial facility’s time only to not have you meet the criteria
    Dr. Dave

  • When I heard about CRISPR the first thing I thought of was Sickle Cell. I realize that the Balck community is not going to openly accept trials but the ones who are wracked with SC pain will step up. The hardest part is going to find the placebo side of the research
    Surely there will be no difficulty in finding active SC patients. Heck, our practice alone can surely feed in 25 or more. How do we get the placebo cohort?
    As far as the other diseases suggested to be treated by CRISPR they are down the road a bit and will require some major funding
    The BIGGEST issue is that we now know how to willinilli clip DNA pieces but do we know EXACTLY what to clop and replace?
    Currently, there have been SEVERAL CRISPR projects that succeeded in resolving the defective gene concern only to have actually removed some needed other DNA snippets that should not have been snipped
    We have treated some segments of our population very poorly in our past some based on some genetic or social issue most simply because they were a captive audience be it desperation or economics or the like and now we are asking them to endure another round to advance science
    It is a stretch BUT knowing mankind like I do I am sure that we will find plenty of potential candidates and then once we demonstrate success the rest will follow
    The key is that science always moves forward the question is who will benefit?
    Dr. Dave (Surgeon Head and Neck Cancer)

  • dumb questions perhaps, but where are the results for the clinical trials for curing diabetes 1 and 2; hemophilia or CF since there is such keen suspicion? Publishing these gets folks excited, esp. diabetes–Perhaps it is too much “better the devil you know than one you don’t” as well as knowing your race is used as guinea pigs for medical research–fix those first, then maybe you will see more confidence. How does carrier – cure fit with malarial resistance?

    • NOT a dumb question at all I think they are just not available but more hype than fact
      We are going to find that MOST diabetes is NOT a defective gene but an altered gene and that might not be treatable with CRISPR. Defective genes are easily fixable with a cut and replace methodology like this but things like diabetes and others are more likely a result of a gene that was fine then was affected by lifestyle and now is no longer functioning properly the big issue is will cut and replace work with them or will they simply get re-altered again and no longer function properly (the case of Diabetes 2 is a good example of this)
      Dr. Dave (Surgeon Head and Neck Cancer)

  • Great article. It was not just the Tuskegee Experiment. See how Henrietta Lacks was treated. There is a long history of health disparities – differential testing and treatment – and disproportionate harm – based on race and income level.

    Today, we still have higher use of dental amalgam – silver fillings – with its undisclosed 50% mercury content – in African American and other communities of color, due to its nearly exclusive use in Medicaid, the Military, and the Indian Health Service. Because it is cheaper, and the FDA ignored the serious concerns of its two expert panels in 2006 and 2010. Because the ADA still maintains it is safe, despite affiliates holding patents as recently as 1995, therefore being rife with conflicts of interest.

    As a result of petitions in Federal court, the FDA website now says there is not sufficient data to establish safety for children under 6. Who goes to the FDA website, and why does the ADA Code of Ethics have gag clauses instructing dentists not to talk about health impacts? Why have many Scandinavian countries and Japan banned it entirely, the EU voted to starting restricting and phase down its use, and it is being replaced by tooth colored fillings in many other nations at a faster rate than in the U.S.?

    These two studies should be required reading. The first on neurobehavioral and kidney function harm to boys with certain gene types, from reanalyses of the Childrens Amalgam Trial data. The second on harm to dentists via higher prescription use for neurological, psychiatric, respiratory and cardiovascular disease than carefully matched controls.

    We need to address health disparities – and reboot dental and medical device regulations to put patient safety first. That will rebuild trust, advance public health, and encourage participation in clinical trials.

    • I get it that you are attached to the amalgam concern but trust me there is no “super-conspiracy” between the ADA and the dental community to support the use of amalgam. First off the mercury is not freely available mercury that is WELL known by any first-year chemical engineering student hence the definition of AMALGAM. An amalgam by definition is a eutectic that no longer has independent segments of the original components left after they react. Unlike a steak that still has salt and pepper on it after cooking, this is an actual reaction like concrete that is no longer sand gravel and cement
      The bigger issue is that the ADA has always been open about the function of Amalgam and the long-term exposures to it have been evaluated for literally decades
      The three MOST researched compounds in all of society are Gator-Ade Aspirin and Dental Amalgam so a bit of UNBIASED research will show you that although the use of amalgam in the young might be a slight concern it is because of the immediate after insertion time, not the long-term exposure that is the concern. It is VERY difficult to study the effects of the mix while it reacts in a population that wiggles like worms for the first 24 hours unlike an adult who can be told “don’t eat on that for 4 hours or so”
      Don’t toss the baby out with the bathwater there are FAR more research papers supporting the use WORLDWIDE then the few that make usually monetary based claims to support removing them or not using them in favor of MUCH more costly materials
      I originally started out in Dentistry before I shifted to surgical cancer therapy and trust me there is no REALISTIC issue with dental amalgam short of the fuel to feed this 30-year long conspiracy theory
      I remember when everyone with MS stood in line to have their fillings removed at HUGE expense since InsCos don’t pay to rip out perfectly good services without ironclad proof that they are defective and these poor patients went into debt to find that afterward their disease still raged on
      Dr. Dave

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