23 and Me, You, Everything
In case you didn’t notice, the age of genomics is upon us.
It recently occurred to me that the subject has surfaced and been explored across an extremely wide range of FSG scenario projects we’ve been working on over the last year – genetic bases in human factors, genomic testing and therapies, performance enhancement informed by ethnic (gene-based) diets, and even genetic mutations in Northeast US fish stocks, as an adaptive response to toxic chemicals.
Years ago when FSG principals were working heavily in the pharmaceutical sector the human genome had yet to be mapped and the marvels it would eventually reveal were merely speculative. We are now just beginning to grasp, if quite incompletely, how big a deal the genomics revolution is and will continue to be.
It’s mind-blowing enough to submit a saliva sample to one of the commercial DNA companies and receive a detailed report back charting your genetic haplogroup, along with a list of hundreds of DNA cousins and, optionally, how much you are at risk for having inherited some genetic disorder. All of this for as little as $79. Millions of Americans have already had their DNA tested. Inevitably, for many, there are surprises – racial and ethnic ancestries that are not part of passed-down narratives of family roots and origins. In a nation still struggling with its racial past, one can’t help but believe that these revelations are, ultimately, all for the good.
Meanwhile, on the commercial side, many billions of dollars are now being invested in genomic science aimed at developing life-changing and life-saving therapies. CRISPR (actually CRISPR-Cas9) and other so-called gene editing technologies are the subject of considerable hope and expectation. In fact, CRISPR is already being deployed in the fight against cystic fibrosis and Huntington’s disease. Researchers are exploring CRISPR applications for prevention and/or treatment of hemophilia and sickle cell. And there’s more. The National Institutes of Health says CRISPR “holds promise for the treatment and prevention of more complex diseases, such as cancer, heart disease, mental illness, and human immunodeficiency virus (HIV) infection.”
To be clear: These are early days still. Siddhartha Mukherjee, the Pulitzer Prize-winning oncologist and author of The Gene: An Intimate History, writes that while science now fully understands the genetic code (how, for example, the data in a single gene is used to build a protein), “we comprehend virtually nothing of the genomic code—i.e., how multiple genes spread across the human genome coordinate expression in space and time to build, maintain, and repair a human organism.”
The emerging field of epigenetics is grappling with that complexity. Epigenetics is concerned with heritable changes in gene expression that are independent of underlying DNA sequence. In genomic parlance, this is called a change in phenotype that does not involve a change in genotype. For the layperson, including this writer, epigenetics is about understanding how age, lifestyle and the environment affect gene expression. This learning will have far-reach effects on everything from medicine to athletic training to mental health and to early childhood education.
There are, of course, some very dark sides to the genomics revolution. In a truly nightmare scenario, bad actors, including nation states, could conceivably embrace genomic technologies to engineer biological weapon, including killer viruses, targeted at specific genotypes. CRISPR or future gene-editing technologies could trigger unintended and irreversible genetic consequences in subsequent generations. Some ethicists fear that what is today somewhat antiseptically called ‘gene management’ (including preimplantation genetic diagnosis or PGD) is a moral minefield that leads inexorably into the dark abyss of eugenics.
What’s troubling – at least from the outside – is that like many other technological disruptions of the present era, the genomics revolution is so highly technical and complex that ethicists and regulators may not be able to comprehend – let alone affect – developments coming out of labs until they are practically out in the marketplace. The scientific community itself appears to be worried, especially about gene editing and the use of human embryos in research. Last year the prestigious journal Nature published a statement calling for “substantial basic research…to check the safety, accuracy, and feasibility of genome editing as a potential clinical tool.”
Genomic Scenario Uncertainty
Needless to say, there is no chance of forcing the gene genie back into the bottle. Cheaper and more powerful genomic technologies are coming. The gold rush is on.
The scenario planning challenge is how to think in a profoundly expansive way about where all this could lead in coming decades--for good, bad and everything in between.