Uncertain Health in an Insecure World – 84

“Science and Faithlessness”

In the Showtime series Penny Dreadful, madness finds the heroine Vanessa Ives (played by Eva Green) in a padded cell awaiting a lobotomy. In the episode titled A Blade of Grass, Miss Ives is seduced by Dracula in the guise of an orderly. When Dracula’s twin, Lucifer, also enters the cell, they both vie for her eternal soul.

Dracula, the lesser of two evils, baits Lucifer… “If they cease to believe in you, do you even exist? They won’t believe forever, brother. We live in a mighty age of science and faithlessness. You’re fading into insignificance, even as I look at you.”

We are incessantly courted by changelings in the guise of policy, science and technology. Do we need to pause and reflect upon the rapid pace of progress, before humanity fades into insignificance... Or even fails to exist?

CHANGE is so seductive...

... in POLITICS

Loss of faith in The System by the global masses has prompted the rise of movements, upending party lines and loyalties. As the U.S. careens towards another “hope presidency”, many Hillary Clinton liberals find themselves uncomfortably to the right of Bernie Sanders progressives. His Feel the Bern movement has exerted a gravitational pull on her coolly calculated campaign, shifting the Democratic Party away from the comfortable center that manufactured the first Clinton presidency. And on the Republican right, billionaire Donald Trump’s brilliant decision to tap into the root of economically disaffected voters, while boasting the return of American greatness, has forced socially conservative demagogues to look the other way – just as they did for Ronald Reagan in The Eighties.

What are the societal consequences of such neo-political movements?

As noted by Thomas Frank (above) in his new book, Listen Liberal, if the U.S. body politic (The Establishment) does not view this as the right time to take its own racing pulse, then American democracy will surely suffer a fatal arrhythmia.

... in MEDICINE

We have addressed the promise and practical challenges of precision medicine (PM). Recognizing that F.D.A. approved treatment regimens (largely based on randomized clinical trials) subsequently fail in a high percentage of individual patients, and that one’s personal genetic predisposition to disease and treatment response is highly varied within the herd, science has recently made great strides towards the creation of individually gene mutation-tailored treatments for disease subsets within an illness (i.e. oncogenes for blood cancers). As a result, precise immuno-therapies are quickly replacing toxic chemotherapies.

But even global PM mavens like Dr. Thomas Wilckens realize that the new
U.S. Precision Medicine Initiative is not a panacea for complex multi-gene mutation chronic illnesses.

Upon reflection, not only has the last 40 years seen medical practice move from generalists (i.e., internists) to sub-specialists (often with procedural/surgical skills), but the care of certain diseases can now only be guided by a team of precisionists. These physician-scientists can tease out the unique genetic characteristics that lead singular patients to a remission or cure.

We have discussed the disintermediation of physicians in patient care by healthcare insurance bureaucracies and electronic medical record burdens. But perhaps the greater threat to modern medicine is the loss of personalized care by generalists – care quarterbacks who can knowledgeably direct a comprehensive medical home model in a longitudinal fashion, with a fundamental understanding of the interplay between the concurrent chronic diseases and potent drug interactions.

... in TECHNOLOGY

One technology that is quick-stepping into the mix is genome editing.

We have reviewed how Clustered Regularly Interspaced Short Palindromic Repeats associated protein-9 nuclease (CRISPR Cas9) has effectively replaced gene recombination techniques, zinc-finger nucleases (ZNF’s) and RNA interference (RNAi) for gene editing. CRISPR is less costly and far more scale-able. The silencing of a solo gene using the type II CRISPR system approach can create targeted gene alterations in both somatic and gene cells. This technique may prove useful in sickle cell disease, where the mutated red blood cell hemoglobin gene could be selectively edited back to a healthy state, without the controversial effects on patients’ germ cell DNA.

The Possible – CRISPR genetic engineering of germ cells – should be deliberately ethically scrutinized for its potential future adverse impact on society.

... in PERSONAL DATA

Do you ever stop to wonder how much of your own personal data is housed in the world’s exploding acreage of server farms (The Cloud)?

Data mining companies have been proliferating. Reddit and Lifehacker (among others) publish lists of the top companies that mine and sell our personal data. StopDataMining.org movements offer pathways to opt-out links that block data brokers like Acxiom, Intelius, Dex Media, Arcadia, xG (Geisinger Health), Watson Health (IBM), Aetna, OptumLabs, etc.

The need for us to thoughtfully consider ownership of our little data was emphasized in a recent court ruling against Myriad Genetics, a Salt Lake City gene testing company that was sued by the American Civil Liberties Union (ACLU) on behalf of four people in the growing movement of those who want all of their genetic information. Typically, Myriad only shares pathogenic gene variants such as BRCA-1 & -2 with patient-clients. On behalf of the complainants, the ACLU’s argued that we are legally entitled [per January 2016 HHS Office for Civil Rights (OCR) regulations and by U.S. federal HIPAA laws] to both our known cancer-predisposing genes and (currently) benign polymorphisms. The Global Alliance for Genomics and Health filed an amicus brief in the case because, unlike other gene testing companies, Myriad has declined to contribute its voluminous big data to an international gene science-sharing network called ClinVar, or to the Harvard-based BRCA Challenge.

Under such careful scrutiny, the regs and the law appear to support the movement’s contention that, “It’s my body, my blood, my data, my choice how I wish to share my information.”

CHANGE is so seductive...

"We live in a mighty age of science and faithlessness"

Like Dracula and Lucifer, science and politics place threatening expectations on innocents.

Perhaps dialing change back just a little today would make for a better future.

We in the Square still believe... and retain a guarded faith in The System.

And like Miss Ives, we have not been lobotomized… YET.