To take the precious things we have apart
To see how they work
Must be resisted for they never fit together again
~ Billy Bragg, “Must I Paint You A Picture”
In my first epic conquest of 2017, I’m wrapping up Siddhartha Mukherjee’s The Gene: An Intimate History. Much like The Emperor of All Maladies, it’s a sweeping, ambitious book that explains where we are by offering a detailed history of how we got here and speculates about what Mukherjee calls “the future of the future.” As E.F. Schumacher wrote, “Any intelligent fool can make things bigger, more complex, and more violent. It takes a touch of genius—and a lot of courage to move in the opposite direction.” Using science, history, and his own story, Mukherjee does just that.
The story of genetics reveals a pattern: Our technological capabilities outstrip our wisdom about how to use them. The technology itself is neutral; our incapacity to predict consequence is the problem, created in part by our inability to remove subjectivity from the equation.
Nazis attempted to rid the world of Jewish people, an offshoot of the eugenics movement that sought to perfect humans through “positive” means (such as creating a sperm bank from self-identified geniuses in hopes of creating more) and “negative” means (disabled children euthanized in Nazi Germany). What seemed to be lost on this whole movement was that the definition of “desirable versus undesirable” is purely the opinion of those who write the rules.
Nazism certainly taught us of the evils that can happen when a government defines those parameters but the stunningly bad ideas don’t stop there. The first disabled child euthanized during Nazism was a baby named Gerhard Kretschmar. Hitler did not seek him out. He authorized the murder after a written request from Gerhard’s parents. Nazis were seeking racial perfection as they defined it and a profoundly disabled baby didn’t fit that definition, according to his own parents. Likewise, in India and China countless female babies have been killed by their parents simply because they are born female into deeply misogynistic societies. It doesn’t take government intervention for people to behave in abhorrent ways.
Now, technology marches forward and scientists understand more about how genes and the genome influence our lives. We sit on the verge of successfully editing genes in humans. Rather than simply plowing forward into everything that’s possible, I think we need to catch up our understanding of what this means. This book is a great start.
Some diseases, such as Tay Sachs, are caused by a single genetic mutation. If both parents carry the recessive mutation, there’s a 50% chance a child will inherit it and a 25% chance s/he will actually develop the always fatal disease. Parents can be tested before deciding to conceive. Using in vitro fertilization, an embryo created in a lab can be tested before implantation. A fetus can be tested in utero.
I had a brush with a devastating mutation during pregnancy when an ultrasound detected the possibility of Trisomy 18. Further non-invasive testing showed it to be highly unlikely and I eventually gave birth to my now fifteen year old son. Had he carried that mutation, he likely would have died before his first birthday so my husband and I would have been faced with a choice to terminate the pregnancy.
But many conditions don’t have such a clear-cut genetic cause or outcome. The BRCA mutation, widely known and little understood, is often called “the breast cancer gene.” In actuality we all have BRCA genes which play a critical role in repairing damaged DNA. But if a certain mutation exists the likelihood that a person will develop breast or ovarian cancer jumps to about 80%. The presence of the mutation doesn’t tell you what kind of cancer it will be or when it will develop.
Significantly, it also doesn’t explain why some people with the mutation won’t develop cancer at all. But as long as breast and ovarian cancer remain incurable, people often choose to have their breasts and ovaries removed before cancer develops and to take medication in order to reduce their risk.
Let’s say we can identify the BRCA mutation in utero or even pre-implantation. Should parents be given the chance to screen fetuses or pre-implantation embryos? Is it morally acceptable to choose not to bring children with those mutations into the world? What risk/probability level of the mutation leading to disease would we consider acceptable?
And what if we can edit out that mutation? Should we? Might we also edit out something else that we can’t predict? What unintended consequences might come from Genetically Modified People?
I suspect most of us don’t have the emotional or psychological capability to make these decisions rationally, to really think in terms of probabilities and odds. I speak from experience here too. When waylaid by a cancer diagnosis, my frantic response was get it out now.
How will owning our own genetic knowledge will affect our decision-making?
And, again, who decides?