When the internet came into being in the early 90s, there were high expectations regarding the opportunities for information access for ordinary citizens, democratization and freedom of expression. Initially, this promise seemed to become reality, but instead, the internet slowly evolved into a bog of data where nonsense and commercially/politically manipulated (fake) news predominate and where you need a magnifying glass to find any reliable information. More and more often, information that is not appreciated by multinationals and governments is censured under the inspirational leadership of large companies such as Google, Facebook and Twitter and under the guise of “terrorism and discrimination” (1). After more than 25 years of development, the internet seems to have turned into an instrument for control and propaganda in line with Big Brother.
Unfortunately, the same is happening with medical information. In the past, medical data was only available to a small group of insiders. That changed in 1997 when PubMed made it possible for everyone with internet access to read medical-scientific research (or summaries thereof) free of charge. However, a small group of people, in the role of editor of scientific journals, through the peer review system or the distribution of research funds, still remained in control of medical research and publications. As ordinary citizens increasingly started to immerse themselves in medical research, it became clear how much manipulation is actually taking place behind the scenes, with a sad low point in the area of Lyme research. Some renowned researchers believe that the vast majority of published medical research is incorrect or misleading, often under the influence of commercial interest. Since 2016, PubMed has offered researchers the opportunity to comment on publications included in the database. Soon, publications by “leading” Lyme researchers were heavily criticized, after which the criticisms were frequently censored by PubMed and sometimes only reappeared after lawyer intervention. At the beginning of 2018, the PubMed administrator announced that the commenting option was to be cancelled in February 2018, supposedly because it was not used enough (2). To make up for this removal, comments from the external website PubPeer are temporarily posted on PubMed; whether this is a sound alternative to ensure truthful publications and researchers remains to be seen. Knowledge is power …
This problem does not only occur in the virtual world of medical information, but also in the real world of diagnostics and treatment. There are large amounts of money involved in healthcare worldwide, much more than in for example the arms industry. So there are huge financial interests regarding medical publications and the “democratization of medical information”. For over 25 years – especially since the Dearborn conference in 1994 – the American IDSA and CDC have strict control over Lyme diagnostics, aided by their henchmen in many Western countries, including the Netherlands. As a consequence, there have been no improvements in all these years (and that is understated), where other medical techniques have sometimes taken giant strides forward.
I have written here before that I believe this policy is untenable in the long term, since the progress in the field of e.g. DNA technology is developing fast and cannot be stopped in the end. An interesting example of this is Sherlock * (3, 4), a new diagnostic technique based on CRISPR ** technology that is in the spotlight due to its considerable possibilities and risks. To give you an idea of how quickly developments are progressing: CRISPR was developed in 2013, the first Sherlock version appeared in 2017 and nowadays, we have Sherlock 2.0, including 100x higher sensitivity than last year’s version. Sherlock enables DNA diagnostics similar to PCR tests, but without the need for a PCR equipped laboratory, DNA sequencers etc! You could basically perform the test yourself at home, with a drop of finger prick blood and a simple, inexpensive test strip, custom-made to display a specific type of DNA. It works just as easily and quickly as a pregnancy test that you buy at the chemist, but with the advantages of the high selectivity and sensitivity associated with DNA technology. Sherlock is able to search for four types of DNA at the same time (for example Borrelia and the best known tick bite co-infections) and give an indication of the amount of DNA. Theoretically, the sensitivity is comparable to that of the more sophisticated PCR tests: Sherlock is able to detect one specific DNA molecule in 0.1 ml of liquid.
To clarify: this is only a principle that has been demonstrated in practice, there are no concrete Sherlock tests commercially available yet and the practice of medical diagnostics is often slightly more stubborn than the theory. Presumably, besides the Sherlock test strips, a tick bite diagnosis would also require a simple pre-treatment of the blood sample that you cannot perform yourself, but for instance your GP could. And undoubtedly there will be more similar, competitive techniques. This development is important because patients will become less dependent on medical institutions and large companies with their own interests at heart, as we keep noticing with Lyme diagnostics. There are better Lyme tests available than the nearly worthless standard serology, but “for your own interest”, clinicians and governments ensure that these tests are not available for the average patient.
I would not be surprised if within five years you would be able to order the (by that time greatly improved …) Sherlock test strips for detection of tick bite diseases, for a small amount of money from a foreign website, or have them tailor made by a nifty cousin who ordered a CRISPR craft kit somewhere. The government, medical sector and Big Pharma will undoubtedly try to discourage it, but that will not be easy given the growing accessibility of this technique and the lack of proper alternatives for patients. The big question is: will the established Lyme order be forced to release their grip and finally allow proper DNA diagnostics for Lyme, or will they – parallel to the developments on the internet – keep trying to mislead patients and maintain full control over your medical information? (N.H.)
* SHERLOCK = Specific High-sensitivity Enzymatic Reporter unLOCKing
** CRISPR (Clustered Regularly Interspaced Short Palindromic Repeats) or actually CRISPR-cas9 is a technique that uses a kind of molecular scissors to make very specific changes to the DNA sequence, the genetic material of an organism. In principle, this could for instance be used to cure hereditary diseases or give an organism new characteristics.
(1) The web can be weaponised – and we can’t count on big tech to stop it https://www.theguardian.com/commentisfree/2018/mar/12/tim-berners-lee-web-weapon-regulation-open-letter
(2) PubMed Commons to be Discontinued https://ncbiinsights.ncbi.nlm.nih.gov/2018/02/01/pubmed-commons-to-be-discontinued/
(3) SHERLOCK team advances its CRISPR-based diagnostic tool https://www.broadinstitute.org/news/sherlock-team-advances-its-crispr-based-diagnostic-tool
(4) Multiplexed and portable nucleic acid detection platform with Cas13, Cas12a, and Csm6 http://science.sciencemag.org/content/early/2018/02/14/science.aaq0179
Modified: May 2, 2018
Aangepast: 25 november 2018