Perhaps you read the thought-provoking story by Robin Marantz Henig in the New York Times Magazine a few weeks ago about Sandy Bem, a woman with a diagnosis of Alzheimer's disease who decided that when she felt she was no longer the self she recognized, she would commit suicide. She lived with her declining memory as long as she felt she wanted to, and then ended her life. Of course there is disagreement about whether people should have a right to make a decision like this, but we think there is a lot to be said for our freedom to make that choice.
So when our friend said that it was a relief to know that someday people won't have to go through what her husband was going through, we thought we agreed with her. We assumed she meant humane assisted suicide should be legal and available. But no. "Soon," she said, "because of genetics, people won't have to die."
She is an atheist, and has no belief that her husband, or she herself, or anyone is going to a better place when they die. So clearly it's comforting to her to think that, while she herself may not benefit, in the future life truly won't need to end once geneticists have sorted out the science. I think Ken muttered something about how genetics is a long way from that, and we quickly changed the subject to talking about the weather. Who are we to take away this comforting thought?
The new religion
But where did she get this idea? She certainly didn't invent it. She is thoughtful and educated, reads, she watches the news; this idea came from scientists. All that human genome project hype, before and after it was 'finished', reputable scientists promising us the end of disease, and even that one day genetic knowledge would let us live forever, or at least as old as Masuthelah. Now the new million genome talk is much the same. Our genes will predict the diseases we'll get, precisely, and because of genetic engineering, gene therapy and targeted pharmaceuticals, we'll be able to prevent or cure them. Worth every penny of the billions that are going to be spent on setting up the infrastructure, collecting all the genomic information, doing the analysis.
We've already blogged about this new phase of very expensive research (including here: "What's 'precise' about 'precision' medicine (besides desperate spin)?"). So the iffy payoff is not our point today. Today we want to imagine that the promises all come true -- your future is written in your genes, and whatever you are destined to get is predictable from your genome. And then prevented because gene therapy will soon be routine, like having your oil changed, and bad genes will be replaceable. Or, if you do get your disease, it will be treatable with personalized pharmaceuticals, targeted at, well, we're not really sure what they'll be targeted at but they'll work that out.
|"Gold Pan" by Nate Cull from Christchurch, New Zealand - http://flickr.com/photos/64857724@N00/2876115. Licensed under CC BY 2.0 via Wikimedia Commons|
And it's not clear what the ultimate goal actually is, either (other than the 21st century version of the Gold Rush, when the Levi's makers, the gold pan producers and the saloon owners got very rich). Disease prevention? Treatment? Immortality?
But let's think this through
Unless every conceptus is sequenced, most pediatric genetic diseases won't be preventable by precision medicine that much better than they are today with genetic counseling and early tests like ultrasound, unless every potential set of parents is vetted for carrier status for every known genetic disorder, and IVF is used to conceive and produce the perfect-child. Maybe people with money will do just that (indeed, direct-to-consumer genetic testing companies now offer testing for carrier status for a number of diseases) but who will pay for it to be done routinely for everyone?
And, we're a long long way from treating genetic diseases routinely with gene therapy, never mind with other, non-genetic treatments. And, somatic mutations that occur in the fetus are responsible for some pediatric genetic diseases, and they aren't predictable or preventable. So, we'll still have pediatric diseases.
And, we'll still have accidental deaths, and deaths from infectious diseases, because no antibiotic strategy will be perfect, and bugs will always outrun them anyway, and we'll probably have wars and suicides, so we won't all live forever. (Speaking of unequal access to medical knowledge and let's throw in care as well, shouldn't we be thinking about the unfairness of who gets those infectious diseases, and will continue to do so, as we dedicate billions of dollars to the promise of preventing genetic disease? Or who goes to war?)
So, presumably it's those of us whose fate is late-onset chronic disease that precision medicine is aiming at. Presumably those are written in our genome. But, what about our friend's 90+ year old husband, who is dying of old age? Would his death have been preventable, in theory? Nothing there to prevent, except wearing out. Oh, wait, telomeres. Right, he'd have had his lengthened long ago.
What about diseases that are largely due to lifestyle? Heart disease or type 2 diabetes caused by obesity, which let's say is due to inactivity and poor eating choices (this week sugar, last week high cholesterol animal proteins)? Even people who believe GWAS is showing us the cause of these kinds of late onset diseases acknowledge that they are polygenic, and that genes don't explain all the risk. How will they be prevented with increased genetic knowledge? Oh, not to worry--computers will do it if we turn enough statisticians onto the job!
But, ok, let's say that despite our sneering, it really is possible
We really can predict and prevent genetic disease. Then what? Either telomere therapy will be keeping us all young forever, or more and more healthy but old people will be stacking up at the other end of life. (Will we have prevented dementia? Joints wearing out? Not clear.)
Neither of these options looks good to us. How will the young-in-years ever get jobs if the young-at-heart keep them for 2, 3 hundred years, not to mention forever? Or, who will take care of all the healthy elders, and where will they live? We will have to feed, clothe, house, heat and cool, transport, and entertain them, or they will stay in the labor force and we'll have to figure out what new generations of new people will do for a living. If the elderly and super-elderly become feeble and need special homes and care, well, that will at least provide jobs for the young.
'Housing' has hidden implications. Housing takes space, uses energy and water, generates sewage, and that must come from somewhere. If we stop plowing under former people, we'll have to plow under farm land. Or maybe we'll just stack condos on top of each other until they reach as high as those skyscrapers oil-rich regions are building. Oh, of course, we'll put roof-top gardens on them. And, perhaps we'll either build some on Mars or one of Neptune's moons, or we'll grow beans and cattle there and fly them 'home'.
And, what about the extreme inequality of maintaining more and more old people, at huge cost, in rich countries, as they consume more and more resources, while people in poor countries continue on as now, with no access to the brave new world of precision medicine?
Demographic inevitability looms over any promises of genetic nirvana. It leads not just to population growth, but generally to exponential growth, that gets wildly out of any realistic sense of control rather quickly. Yet demographic unconstraint looms silently behind all the rosy promises that health research hyperbole make. Like death, immortality is something we don't really want to think about.
Rosy reassuring promises have been a long-standing strategy of politicians and preachers and it's no surprise that geneticists, being intelligent people, see the gains to be made by making them. But even if they don't, the more one thinks about this, the more of a social wrong the promises of precision medicine seem to be. Someone needs to tell the people.
Late news flash!
As if to help us make this point, as this post was just being finished, a news item appeared reporting that the FDA has just approved what appears to be a major new drug to combat high 'bad' cholesterol levels, LDL. Clinical trials have shown the drug (which mimics the action of a genetic mutation that blocks LDL production) to drastically lower LDL cholesterol, but whether this leads to drastic reduction in heart attacks is not yet known. Assuming it does, then what we'll get over the next few decades is more and more people living long enough to become like our friend's husband. How many will wish they'd had a mercifully quick heart attack instead of the lingering decay they will suffer as a consequence?
There is no easy answer. Preventing disease is surely good. Over-promising is surely not -- except for the beneficiaries of the resources that go their way as a result. And the makers of the gold pans. But, with less disease and more and more people dying at older ages come profound social implications, and these should be part of the discussion.