There is a sufficiency in the world for man’s need but not for man’s greed. — Mahatma Gandhi
The COVID-19 virus is overtaking the world (a third surge is evident in the US now) and causing death and economic ruin wherever it is found, but not for all. Whenever there’s a disaster, therein lies the seeds for greed for those who see incredible opportunity in the wake of helplessness.
Who among us doesn’t feel helpless in the face of this virus that can kill so quickly despite the age or the social position of the patient?
Yes, we should be following the guidelines offered by medical experts who have advised us what to do to slow down or stop the pandemic. But here is where helplessness meets greed in a most secretive manner. And it’s not the first time this has happened, and it won’t be the last unless we have legislative protection.
Legislative protection, you say? How could this be a legal matter? Do I mean we should mandate masks and throw people in jail? Or fine people for not maintaining social distance? No, that is far too obvious. I’m referring to something that is being done right under your nose, and you’ve given tacit approval to it without even knowing you are.
The Theft Begins Here
Medical experts are frantically calling for ever more testing for the coronavirus in symptomatic and asymptomatic people. In fact, it seems that the ones who don’t show symptoms are more problematic than those who are obviously ill. Taking temperatures?
Asymptomatic individuals have no heightened temperature readings. Therefore, it may seem like they’re screening, but it isn’t beneficial. The asymptomatic are shedding virus everywhere they go.
Several tests have been designed to collect specimens to check for the presence of the virus. Primarily, however, the result is that they collect your DNA with every swab, and it’s sent to a laboratory for analysis. Then where does that sample go, and who has access to the data extracted? Not you.
The UCDavis medical facility does a fine job of reassuring patients about the nasal swab, but where is the part about what happens to the material later? I couldn’t find that in their Q&A portion of their website.
Why Should You Be Sceptical
Clinical trials will be conducted with the specimens collected; of that, I have no doubt. They want to know if the virus is mutating and work on preventing it from replicating itself. This stands to reason. But what are your rights here?
A portion of a sample consent form from a protocol for MERS at Johns Hopkins reads this way:
Request to collect and store biospecimens for future research
As part of this research study, we would like to ask you to let us store your biospecimens, the MRSA bacteria, if found, and health information for future
MRSA research. This may include, comparing the bacteria on your swab to bacteria from sexual partners or in patients from other local hospitals. The
same rules and procedures to protect your privacy discussed here will be taken for all future research.
But you have to read on into the lengthy consent form to find:
If you join this study: You will not own the data, or the tissue, blood, or other specimens given by you to the investigators for this research. Both Johns Hopkins and any sponsor of this research may study your data and the tissue, blood or other specimens collected from you.
What about future monetary benefits from your sample? This is how that portion is handled:
If data, tissue, blood or other specimens are in a form that we believe does not identify you, they may be shared with other academic medical centers,
non-profit organizations, corporate sponsors and other commercial companies without your consent or IRB approval.
You will not own any product or idea created by the researchers working on this study.
You will not receive any financial benefit from the creation, use or sale of such a product or idea.
You will not have any say in the matter regarding how your sample is used, who uses it (as long as you’re not identified), nor will you have “any financial benefit from the creation, use, or sale of such a product or idea.” You’ve just given someone a potential financial windfall, and you will not get a penny or any input.
Legal Cases in the Past
The long-awaited ruling by the US Supreme Court that human genes are products of nature and cannot be patented may effectively end the monopoly that companies such as Myriad Genetics and others have on genetic testing involving patented genes.
The missing piece is that while they cannot receive patents for your genetic material, it doesn’t rule out their using it once you’ve signed that consent form. And consent forms have not always been used in the past.
Henrietta Lacks is a prime case of nefarious research depriving a poor woman and her family of their rightful financial gain after her death. Tissue had been removed from her cancerous growth both before and after her death, cultured, and turned into a highly profitable, licensed product. No research with the HeLa immortalized cell line could go forward without paying a fee.
Since the 1950s, scientists have grown as much as 50 million metric tons of her cells, and there are almost 11,000 patents involving HeLa cells.
As was then the practice, no consent was obtained to culture her cells. Consistent with modern standards, neither she nor her family were compensated for their extraction or use.
Once the family became suspicious when they were asked for blood samples, the secretive culturing and licensing story came to light.
No one is saying you should not agree to a swab to curb the current virus. But no one should be benefitting without your agreement, either.