Google/Facebook user behavioral data + their users' DNA is about as scary invasive as it gets.
Google/Facebook user behavioral data + their users' DNA is about as scary invasive as it gets.
I mean, besides being denied health insurance because of what someone might find in your DNA, why are you so afraid of something even having your DNA, because it might result in GATACA-like society? If so, we need strong legal protections against discrimination by DNA, but we can't throw out the baby with the bathwater.
There's too much good that can be done to human wealth and welfare by eradicating disease and paranoia about theoretical danger should be challenged into laws to protect against discrimination.
What do you think Facebook + DNA is going to do to harm you? Try to sell you a pharmaceutical or medical treatment? A cure for balding or erectile disfunction?
The GATTACA society is rapidly becoming reality, just not institutionalized yet.
People strongly consider race in dating; we're kind of already there: https://blog.okcupid.com/index.php/race-attraction-2009-2014...
CF is a homozygous recessive disorder. Both parents have to contribute a defective gene in order for the child to have CF. If one parent is a carrier and the other is not, there is zero chance of the child having CF, barring random mutations which have been known to happen. If both parents are carriers, there is a 50 percent chance the child will be a carrier, a 25 percent chance the child will have no defective genes and a 25 percent chance the child will have CF.
If you actually have CF, you have two defective genes and you can only produce children who are either carriers or who have CF, depending on the genes contributed by the other parent. If the other parent is not a carrier, the children cannot have CF.
As someone who both has CF and has raised a child with it, I absolutely do not want more children with CF. It's a horrible burden for the parents and only a deeply sick sadist would wish such a thing upon their child.
I have never lacked for male interest. I don't know why the hell that is because I'm quite open about my medical situation. I am now menopausal, so it is a moot point. But I absolutely spent some years agonizing over how to screen out CF carriers from the dating pool. Having another child with CF is one of my worst nightmares. I would rather be taken out and shot.
This is genetics 101.
There is a difference between hand wavy "runs in the family, but we don't really know how it works" and a bona fide genetic disorder whose alleles have been mapped to some degree or another.
Edit: To be perfectly clear, if it is not genetic and merely tends to run in families, it may be due to a variety of nongenetic factors, such as diet and lifestyle. Smoking also tends to run in families. Smoking is not a genetic disorder, though it significantly impacts health.
If it is not genetic, it's heritability is not going to show up on your 23 and me profile. Fretting that it will basically means you don't know what you are talking about.
"Runs in families" needs to be very clearly distinguished from genetic disorders per se. The former suggests correlation with an as yet unidentified cause or causes, as there may be various contributing factors. The latter is a case of identified cause.
Easy enough to confuse if your own life does not depend upon it, but absolutely not the same thing.
"I don't really have much to offer, but this DNA surveillance company says I have great genes!"
I understand the negatives of having everyone compare genes can get kinda "master race"-ish but at the same time it is still heart breaking for kids to be born with stuff that could be prevented.
For people really heart-set on having children, I think it would be important to know your odds ahead of time before you get to the point of "ok lets have a kid together".
If you're actually looking for a pie in the sky answer, what happens when one if these entities gets popped and someone (state actor?) takes regional data to produce a very effective targeted bioweapon?
But the real answer is: you tell us when you find out the hard way. In the meantime, my personal info, of any kind, will continue to be protected, to the very best of my ability.
When medical research even begins to use the massive amount of data they already have on patients from billions of routine visits, tests and hospitalizations productively, we can think about giving them more. We are so laughably far from that point that adding more data to the mountain doesn't make sense.
I have.
I was 26 or thereabouts (it's been a while), in good health, but had one "touch base" appointment in my prior 2 year medical history (what the prospective insurer wanted, at that time). The appointment had no ongoing medical/treatment implications; it was simply a follow-up with a prior provider. Fortunately, a friend of a friend ran my application "unofficially" by the insurer's underwriters; if it had been a formal application, the result would have ended up in a cross-insurer database of decisions made whether to insure. Yes, there actually is -- was, certainly, at that time -- one, and if you landed in it with a "deny", getting anyone else to insure you became an order of magnitude more difficult. So I was told by this industry professional -- again, as a favor to my professional contact and friend.
More recently, I've had a minor condition that an eminent surgeon refused to operate on. Cost/benefit didn't merit it; his recommendation was simply to monitor.
When I changed from employer provided insurance to individually insured, I was denied. There was nothing I could do, and the condition did not hinder me in any way. Nonetheless.
Again, through the fortune of having a (different) professional contact and friend in the industry, with an allied company, I was able -- via a flaw in their processing of the application -- to get a re-evaluation. And a policy written, albeit with a rider excluding that condition.
But their initial reaction, before I "pulled strings"? They didn't offer me a policy with an exclusion rider. Nope, just "deny".
SO, many people who are paranoid about this kind of thing and "their health data getting around", are for damned good reason.
I agree, the knowledge and health benefits of sharing this data could be enormous. Think of what it could do for epidemiology. Best practices. Etc. Etc.
But, you want me to share it? You want me to sign on to a public program of same. You're going to have to guarantee that the data won't be used against participants.
As in, you do so use it, and you personally go to jail with a felony conviction and a multi-year sentence. And your company gets severely penalized and, if the behavior is widespread and with significant negative outcomes for those discriminated against, its own "death penalty".
You want the data? Demonstrate your good will. In ironclad terms.
The Affordable Care Act's full enactment came just in time, for me.
Unfortunately, all legislation consists of two essential components: 1) The law, itself; and 2) funding (the budget process).
Republicans baldly stated, after Obama's election, that their primary, number one objective was to make him a one-term president. Before all else.
Despite its coming out of what was essentially a Republican design, then Governor Romney's health care insurance program in Massachusetts, Republican's went after the Affordable Care Act -- after labeling it "Obamacare" -- with a vengeance.
A primary way they crippled it, was by not providing the funding that was written into the law.
Insurers were given a 2 year time frame in which they could recoup their losses, until new participants' "deferred care" was taken care of and the companies had better demographics and cost projections (actuarial studies) upon which to carry forward.
When they went to the government to be made whole, under this provision, they were paid about 15 cents on the dollar.
So of course, premium costs increased dramatically, plan options became more limited, and companies started to exit the ACA marketplace.
Meanwhile, the Republicans made endless attempts to "repeal" the ACA in one fashion or another. Claiming they had a "better plan", that would provide better coverage at lower cost.
Now, they've had both houses of Congress and the executive for over a year. Still no sign of an actual "plan". Just continuing efforts to destroy the ACA.
So, going forward? No, I don't think this problem of pre-conditions can be considered solved. The party in power keeps trying to reintroduce it.
And I, for one, have no more trust in our society. Maybe I'll find another position that includes an employer-provided group insurance plan. Or a group plan through a professional organization.
If I didn't have various things tying me here right now, including elderly parents, and I had the opportunity, I'd leave the country.
I've always lived modestly. And it seems that is even part of my problem. The U.S., always somewhat hypocritical, is becoming more and more a land of "winners" and "losers".
Just look at our "fearless" leader, using the "L" word -- quite derogatorily -- left and right. If we're supposed to take our cue from our leadership, well then, f-ck this place.
Calling anything that comes out of MA "republican design" is a little less than truthful.
Regardless of how you feel about the merit of the MA system or the federal system there are no republicans in MA, just democrats who will say what they need to say to run against incumbent Democrats.
I could also live with a system like Germany's, where insurers are private but the state requires equal treatment and effective systems of cost control.
No system's perfect, and every system needs to be effectively managed.
I've long since come to the point of wondering how much the U.S. behavior actually negatively impacts other countries' health care systems.
In many ways more indirectly that this following, but also explicitly in Canada, they keep pushing for increased privatization. Want that marketshare, and to be the middleman between patients and services.
I think the good part is that we have a very good state healthcare, it's non-optional for basically 99.9% of the population.
The sad thing is that our actual healthcare system (doctors and hospitals) are in need of workers and doctors which leads to them preferring the privately insured patients.
[0]:https://www.wsj.com/articles/china-snares-innocent-and-guilt...
The primary goal of business is to make money. Or, in other words, to isolate us and make us feel inadequate so we buy more things with money we don’t have to impress friends we don’t have.
I mean, if I was being cynical. I’m not, but if I was...
In all seriousness though, with as much good as this data can do, it belongs to the public, not to the highest bidder.
Also, regulations go ignored and legal protections are only available to people who can afford a lawyer who can prove wrong doing.
At the time, I ignored the fact that it said I was 4x more likely to develop colon cancer (I was in early 20s). My sister was diagnosed with colon cancer 3 years ago. When you are a woman diagnosed in your early 30s, apparently it is due to genetics. She discovered it by going to three different doctors after insisting she wasn’t feeling well and that it felt “deeply internal”. The doctor who suggested a colonoscopy did so because he had an internship for a year at a cancer clinic in Boston. The others thought it was in her head. Well they found a malicious tumor and the prognosis from the nations leading cancer clinic was to remove her colon, her uterus and ovaries and large intestines (in their entirety). You can imagine this is a lot to ask of anyone. We asked for data that supported the conclusion that if we don’t remove all of these parts the cancer would spread to her ovaries and kill her and there was literally none to be had. It was 100% based on the doctors personal experience (again we were at one of the top clinics in the world for this).
There is something structurally off with the modern medical system. I believe it relies too heavily on anecdotal experience and memory. I don’t know about you but I can’t remember what I ate yesterday. I think services like 23andMe are on to something, if only as a data point to empower patients to self advocate. We did nothing with the data but he moment I got the phone call I couldn’t help but wonder if we could have found this earlier.
On a semi-related note, I've had a few conversations with physicians about the utility of AI in medicine, and all of them seem to be adamantly against any technology that displaces the individual doctor as dictator/hero of the medical hierarchy.
In one memorable exchange with a surgeon (and friend), I pointed out that doctors, like most other educated humans, are pretty terrible at applying statistics to any kind of complex decision-making - and I brought up your observation that doctors are limited to the knowledge/anecdotes/heuristics that fit in their own heads. Why not employ some kind of machine intelligence to at least aid in diagnosis, double-check treatment plans, prevent medical errors, etc? My friend abruptly changed the subject and began waxing poetic about how his decades of experience allowed him to glean enormous amounts of information from the mere tactile sensations of a loop of bowel in his hand during surgery. How would a machine replicate that, he asked. The conversation wasn't even about robotics.
I don't have a lot of faith that doctors - outside of a few pioneers - will begin using medical expert systems until they are forced to.
I think AI in medicine can be great, especially if you start using it to augment a physician by keeping them up to date with the most recent research/papers/literature on a given topic.
I have a spreadsheet that I actively log the total amount of time I spend with my doctors and their staff when I see them in person. All I am going to say is god bless nurse practitioners.
Excuse me if I am intruding and do please disregard my question if you prefer not to answer.
I'm presuming your sister did not follow the therapeutic regimen recommended to her. If this is the case, would you mind sharing what treatment she did pursue and whether she is currently in remission?
In any case, I hope your sister is well as she can be. I hope also that you and the rest of your family remain healthy despite your genetic predisposition.
I am happy to chat about this and she is as well to the extent you wish to go straight to the source. After her recovery, she organized a group of young mom's that meet regularly to help each other cope with cancer (and what she considers to be the more onerous issue - the thought of not seeing your kids grow up).
I'm sure sure how that would work? How do you send a bio sample over the internet?
The Alice company would either put DNA collection kits for sale on Amazon or tell people where they can buy a kit that meets the required criteria for collection.
Then people pay the company in bitcoin (how to separate your bitcoins from your identity is left as a exercise for the user) and once they've paid they're provided an input field to enter a public key they've generated.
The website would then generate a barcode you'd use to label your sample before mailing it in, or it could be a QR code of your public key.
When a sample arrives at the lab they scan the barcode, and check to ensure that there is a public key tied to that bar code and that they've paid.
They then run the sample and publish the results online, accessible to all, but also encrypted with that users public key.
The user then checks the website every day for week after they've sent their sample in. Once they find their results by searching all results for the one labeled with their public key they download the results and then use their private key to unencrypt them.
""But its for the good of humanity, so don't worry about any possible downside.""
Personally, I am trying to develop molecular cryptography, so that genetic data can be protected even if, theoretically, we cannot trust our computers.
The ancestry stuff is really really cool too. I'm 2.7% neanderthal! My whole family discovered aspects of our history that we didn't expect.
It's worth noting that's not a selling point for many Americans.
From incomprehensible billing and having to fight for coverage with health insurance, to dealing with antiquated offices (fax? really?), never mind the hassle of scheduling an appointment over the phone, going in to an office, and seeing a doctor who's rushing you out the door, "normal healthcare avenues" is cumbersome, and persists only due to lack of real competition in the marketplace. (The doctor, of which there are really truly awesome ones, is a cog in a far larger machine.)
Still, the technology that allows us to screen a fetus at 12-weeks of pregnancy is quite impressive.
Definitely not sequencing, though.
You're not just making this choice for yourself, you're making it (to some degree) for everyone you are or will ever be related to. That has profound implications that people aren't entirely considering when they spend the $50 (or whatever) and spit in a cup.