Your Genome, Your Data
from the other-digital-revolution dept
The computing revolution is not the only one driven by constant scaling of technologies: the field of genomics — the study of DNA sequences — has also enjoyed rapid falls in basic costs over the last decade and a half. This means that whereas the first human genome cost around $3 billion to sequence, we are fast approaching the point where it will cost first a few thousand, and then a few hundred dollars to sequence anyone’s complete DNA. An interesting post on the Health Affairs Blog points out that neither the law nor society is ready for this.
Companies like 23andMe are already offering people the ability to find out about a range of important genes very simply, and for relatively low cost:
The concern is that someone might learn of that same risk [for breast cancer] for $499 by spitting in a tube and hitting the “breast cancer result” button at 23andMe, a company that will test saliva samples for diseases as well as for DNA ancestry. No one should take an action, such as prophylactic surgery without confirming results from 23andMe, which reports on only the three most common mutations.
Against that background of possibly life-changing or even life-threatening decisions being made on the basis of results obtained from a blob of saliva, the Food and Drug Administration (FDA) is now looking to regulate this market. But in the opinion of the article’s authors, there’s a danger here:
If regulators impose rules that allow us to obtain genomic data only as a medical service and through a health professional, however, access will never be cheap because it will always be bundled with expensive professional medical services. This is what Germany has done, and we should not follow their lead. By equating genome services to medical services, the German Government has reduced access, significantly limited the possible benefits to their citizens, and dramatically increased the costs.
The authors make a suggestive comparison:
It’s as if [governments] had decided to cut off access to the World Wide Web in response to fears of pornography and copyright infringement. Imagine what the world would be like today if we had passed the Draconian Internet regulation bills proposed a decade ago when the Internet was as young as the nascent genomics sector is now. We would have sucked the water out of the pond that gave birth to the marvels of Google, Wikipedia and Facebook.
There’s another parallel, too. Just as with the Internet and its digital deluge, the imminent world of abundant, ultra-cheap genomic data could also could power the growth of a huge new economic sector:
Our curiosity — and sometimes our health — will require ‘experts’ to do the science and to explain its implications. Some of these “genomicists” will be health professionals no doubt: genetic counselors, nurses, social workers, or physicians who learn the intricate math and follow the exploding technical literature. Others will be experts in genealogy, history, ethnicity, engineering and anthropology. New businesses are emerging to create interpretive software and interactive websites that walk us through tours of our genomic data. If you’re young and computer savvy; if you study genetics and read anthropology and history, you may have a job in a field that is just coming to life. That is, if we don’t screw it up by strangling this nascent field in its cradle.
The trick will be to allow these new businesses to aggregate and analyze DNA information while preserving individual privacy and control over genomic data that is unequivocally yours. That’s going to be hard, but the potential benefits in terms of improving people’s health make it worth striving for. For more information, check out the original post which goes into greater detail.
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Comments on “Your Genome, Your Data”
we're grown-ups
The concern is that someone might learn of that same risk [for breast cancer] for $499 by spitting in a tube and hitting the “breast cancer result” button at 23andMe, a company that will test saliva samples for diseases as well as for DNA ancestry. No one should take an action, such as prophylactic surgery without confirming results from 23andMe, which reports on only the three most common mutations.
Wait… what? Where is this hypothetical DIY oncologist going to get surgery? Will she buy an iSurgeon for $799.95 and download Mastectomyv3.0, or just consult WebMD and do it herself, using robotic tools she made with a 3D printer?
If we’re supposed to know what melanoma looks like, and to perform self-examinations for breast/testicular tumors, it makes no sense at all to forbid us to looking at our own genomes.
What’s that? A market disruption headed our way down the pipe?
Quick, shut it down before innovation finds out!
The new techdirt extremely annoying letterbox format
Techdirt has spent a lot of time expounding the benefits of advertising as content. The new letterbox format with annoying self promotion at the bottom is a big FAIL in that regard. It’s not useful to me, it is very annoying when it eventually pops up (distracts from reading the article), and I CAN’T GET RID OF IT. Please take it away for now and try again. I HATE LETTER BOX MOVIES on TV and I will now have to find an alternative to TechDirt on the computer.
Re: The new techdirt extremely annoying letterbox format
If you have a login, you can disable the bar at the bottom in your account preferences. If not, why not consider one if you’re here enough for this to be a problem?
“I HATE LETTER BOX MOVIES on TV”
I like watching movies in their original aspect ratio without the image on the sides of the screen being lopped off to appease people like you. Most modern TVs allow you to choose your aspect ratio, including zooming in to remove the black bars if you wish.
Each to their own, just don’t try enforcing your preference on me. Stop being a lazy ass and use the tools available to you.
Re: Re: The new techdirt extremely annoying letterbox format
“If you have a login, you can disable the bar at the bottom in your account preferences.”
Thanks for the tip PaulT. I did not know about that. I haven’t looked at those in a long time.
Re: Re: The new techdirt extremely annoying letterbox format
Hey folks: you don’t even need a login! The same option is available under “preferences” if you’re logged out.
Wibya just launched the updated version of their bar (it has been there for a long time, just smaller) and we’re still just trying it out. Know that we are listening to everyone’s concerns 🙂
Re: Re: Re: The new techdirt extremely annoying letterbox format
Aha, I didn’t realise that due to my habit of identifying myself when I post 🙂
For my money, the bar is far more obtrusive and annoying than previously and could use an option to get rid of it (a “close” button, say) on the bar itself rather than in the site preferences.
Re: Re: Re:2 The new techdirt extremely annoying letterbox format
could use an option to get rid of it (a “close” button, say)
Yah – we agree on that wholeheartedly. That’s the #1 thing we are looking into.
Re: The new techdirt extremely annoying letterbox format
I agree the banner at the bottom is annoying as hell. Just turn off javascript.
constrictions aren't in my dna
I agree. I think the overall market should be free to explore the various applications of cheaper access to genomic data.
I don’t think regulation should ever be so constricted in America as to say “this product should only belong to this type of field or industry.”
I think regulation should exist for everything. But I think regulation should always come down to two broad factors: consumer protection and prevention of violent or hate-related crime.
“If regulators impose rules that allow us to obtain genomic data only as a medical service and through a health professional, however, access will never be cheap because it will always be bundled with expensive professional medical services.”
That’s because successive US governments have refused to make any serious effort to keep the cost of healthcare from spiralling out of control.
Every law forbidding/regulating/limiting something that is based on the assumption that you’re just too stupid to make decisions on your own should be invalid or the regime that practices it rightly proclaimed totalitarian – that treats it’s citizens as subjects rather than sovereign human beings responsible for their decisions … what they’re contemplating here would be an example of such a law
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“is based on the assumption that you’re just too stupid to make decisions on your own”
When it comes to medical matters the indications from the US, with their direct marketing of fear and medication to end users,are that, that is indeed the case.
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It is shocking at how many incredibly stupid people there are.
Current society has pretty much removed our right to own our person, this is in breach of the Forth Amendment where we are guaranteed the right to be secure in our person.
I should if I wish be able to sell you an organ, but laws prevent this. We lose liberty every day.
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Is this satire? If so, Bravo!
Or do you really want to have the right to sell people your organs.
I think, knowing what business is like when inadequately regulated, that legally allowing such things would be turning a segment of the population into nothing but professional organ donors, a career with little in the way of long term prospects.
In this case and possibly in the case of genomes in the article a little less liberty probably benefits other factors such as the pursuit of happiness and not least, life.
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Less laws doesn’t always equate to more freedom. You think that just because the government no longer tells you what do that someone else won’t. A strong central government isn’t the only way to trample all over someone else’s rights.
If the company is using the same damn equipment from philips or whoever to run this crap, how in the world would a licenced professional in any way make a difference? If the operator of the machine is inept, then bad results will reflect poorly on the company, which it has a reputation and blah blah blah, how the market works. If you get a result back saying ‘Head up, we found this ______ ,see your doctor for more information!’ The person doesn’t go back to them asking for medical advice, they go to a doctor, who will likely order their OWN test that insurance companies would be fine with. There is no reason to restrict any of this. You already can’t completely trust 1 doctor,that’s why people get second opinions… , so obviously whatever the FDA could do does not change the problem of trusting 1 company’s test. Quit trying to save stupid people from themselves, it doesn’t work, you will always be out-stupided.
Are genomic data unequivocally owned by individuals?
Another perspective is that we share the genes as a species. This is part of the justification for not discriminating in the provision/reimbursement for health care for individuals who got dealt a bad hand regarding our shared genes.
I don’t see the point in forcing this to be done through a medical professional. Even if someone gets the data on their own and panic about the results they can’t really do anything extreme without consulting a doctor. It’s not like a woman can just get a mastectomy without first having a sensible doctor consult with her about the pros and cons.
Are genomic data unequivocally owned by individuals?
Shared genes??? You mean some people out there are committing Genetic Infringement and pirating genes that are not theirs?
What will we do about these people?
The very title of the article already shows a lack of understanding about some of the issues with genetic information. Your genome is not just your genome. It also makes up a large part of the genome of your parents and your siblings and your children. You might be ok with doing whatever with your own genome today but your brother or your children and their children are going to have different considerations.
Consider if use of a pregnancy test required medical intervention?
I’ve got a sphygmomanometer. But maybe I should be required to make a doctor’s appointment to check my blood pressure every day?
Blood sugar testers are pretty darned cheap and easy to get these days. Again, should I have to consult my doctor and have his lab run the test every time I need to check my sugar levels? Imagine the benefits to the diabetic community!
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I agree mostly, but as a minor clarification.
The people that get the results need to understand that it’s not a 100% foolproof or accurate. If I used an over-the-counter pregnancy test, it would only be to help my peace of mind, but if my girlfriend still showed symptoms of pregnancy even though the OTC test said she wasn’t, we’d go to an actual regulated doctor for verification.
The test itself should be fine unregulated (As long as the companies post their methodology and accuracy rates). But they should be regulated if they are giving medical advice based on the results.
Just because I can perform a blood sugar test, doesn’t mean I should be giving advice on treating diabetes.