In my last blog post, I wrote about The Amazing Spider-Man, in which an overreaching scientist (spoiler alert) turns into a human-lizard hybrid. Having begun with a wish to cure disease, the scientist literally loses his humanity, and by movie’s end, he’s trying to get the entire city of New York to join him on his personal journey of reptilian self-discovery. Why cure, when you can improve?
Watching the scaly scientist stomping around the sewers and streets of Manhattan, I was reminded of Lee Silver’s Remaking Eden: How Genetic Engineering and Cloning Will Transform the American Family. Silver, a molecular biologist and futurist, also speculates that healing will lead to something more extreme. His projected future begins with parents choosing healthier children, but this inevitably leads to a divide between the “Genrich,” who can afford to engineer their children, and the “Naturals,” who cannot. In a few hundred years the green-skinned, formerly human creatures have arrived. (They live on “the ice-covered northern polar cap of Mars,” and they “barely resembled the primitive Naturals still roaming the third planet Earth.”)
Remaking Eden first came out in 1997. Fourteen years later, as recently reported in Science, Silver is writing the story’s beginning into reality. His new company, GenePeeks, uses a “proprietary algorithm” to “predict disease risk in hypothetical children based on the DNA of prospective parents”:
Silver and Morriss [his partner in the company] are still sorting out which diseases to include in testing.“The initial approach is to focus on serious, life-changing, life-threatening childhood diseases,” [CEO Anne] Morriss says. This might include hundreds of rare recessive diseases, “because there’s no controversy” there, Silver says.
The company’s website features the prominent headline “Protecting our children,” a curious formulation: unless the algorithm in question can not only predict unhealthy children with certainty, but also heal them, the business plan actually hinges on preventing the children deemed to be unhealthy. It’s also curious that the specific diseases to be prevented have not even been decided on; what has been decided, clearly, is an expansion beyond disease. Healing is only “the initial approach,” severe disease provides an uncontroversial starting point, and the “proprietary algorithm” offers the means. (For a closer look at GenePeeks' approach to business, see Pete Shanks' recent post.)
The webpage has only two images: one is a beautiful, healthy baby, and the other is a laptop. Two double helixes, one red and one blue, are streaming onto the screen from above. It is (forgive the pun) a pregnant image. An uncluttered white background suggests labs, medical spaces, purity. The child is alone; the parents are reduced to double helixes, streaming into the computer. Context and story are absent: we have only the promise of technology, and the perfect child.
Why do the aesthetics matter? For several reasons. First, they are being used to appeal to consumers, and so they elide, or replace, the serious discussion that should attend a technological practice of this scope. Second, the child’s beauty is ethically charged: the beautiful child is the one you want, implicitly opposed to the potential children being tested for. Third, those aesthetics are not simply expressed in a book; they are potentially amplified by the technology on offer. It is one thing to advance an idea about health or disability, another thing entirely to write it into the genome. But we live in a time when our stories and our codes are increasingly interwoven.
This is particularly true in the case of GenePeeks – not only because the company occupies a part of the trajectory mapped out in Silver’s book, but also because Anne Morriss, the CEO, has a son with one of the rare diseases in question. According to the Science article, Morriss links that fact to the company’s mission. She “believes that expanded testing could help others avoid her family’s fate: Her son was born with MCAD deﬁciency, a rare recessive disorder in which both parents carry a disease mutation. MCAD deﬁciency is treatable with dietary modiﬁcation, and Morriss says her son is thriving.”
Morriss’ story, her experience, and the meaning she finds all deserve to be honored and respected. However, there are always other meanings: a child’s arrival interacts in unpredictable ways with previously held values, so we should not assume, for any condition, that one person’s experience is representative. In the case of MCAD, where one parent might head up a biotech company, another might start a nonprofit foundation to disseminate information to parents, or fund research that directly helps people living with MCAD, or found a company that manufactures delicious, MCAD-friendly TV dinners, or look around for an unused ribbon color with which to promote an awareness parade. Not every parent sees a child’s condition as a fate to avoid.
In any case, the founders are casting a very wide net for fateful conditions. “[S]erious, life-changing, life-threatening”: what, exactly, counts as “serious”? It’s more than a rhetorical question, because there are many conditions – for example, being deaf – which seem like tragedies to the outside world, but are often experienced as a positive identity from the inside. But then, Morriss and Silver are also hoping to forecast the chances of autism and Type 1 diabetes.
Can that forecast be accurately made? The Science article provides skepticism from scientists and bioethicists both. I’m a writer, not a geneticist, so I can’t comment on the specifics. However, a recent story airing on NPR, even from my layman’s perspective, seems relevant: it turns out that we are all carrying around a lot more disease mutations than anyone thought, and lots of people can be perfectly healthy despite being carriers. The word that keeps coming up in the article is surprised, as in “the prestigious, top-of-their-field geneticists were surprised at the number of disease mutations.” (I’m paraphrasing.)
I don’t want to be rude, but if we’ve been only recently surprised by the number of genes we have, and more recently surprised that most diseases are multigenic, and only just found out that we can have buckets of mutations and be A-OK – well, either Silver and Morriss must have one hell of an algorithm, or they’re selling a certainty they don’t have. To quote the Harvard geneticist Ronald Green, "The critical take-home medicine here – one that needs to be reinforced over and over – is that as we enter the age of genomic medicine, simply having a mutation in a disease gene does not mean you have the disease or will get the disease."
Of course, it’s possible that Silver’s algorithm may lead to an unintended result: the recognition that none of us is without risk. It may be that this recognition may even lead to broader acceptance of the humans who already exist – and the further recognition that, even if our technologies of prenatal detection improve, we will still need to build a world that is inclusive and fair.
Will this actually happen? As a primitive Natural, I find it hard to say. Perhaps, one day, a more evolved being will be able to give the answer.
received his M.F.A. in poetry from Cornell University. His first book, a
collection of poems entitled Textbook Illustrations of the Human Body,
won the Gorsline Prize from Cloudbank Books. His memoir about raising a
daughter with Down syndrome, The Shape of the Eye, was published in SMU
Press’ Medical Humanities Series. Praised by Abraham Verghese as “a
poignant, beautifully written, and intensely moving memoir,” The Shape
of the Eye was awarded the 2012 Oregon Book Award in Creative
Nonfiction. Estreich lives in Oregon with his family.
Previously on Biopolitical Times:
Posted in A "Post-Human" Future?, Assisted Reproduction, Biotech & Pharma, Genetic Selection, Reproductive Justice, Health & Rights
Comments are now closed for this item.