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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we're grown-ups
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.
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Quick, shut it down before innovation finds out!
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The new techdirt extremely annoying letterbox format
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Re: The new techdirt extremely annoying letterbox format
"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.
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constrictions aren't in my dna
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.
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That's because successive US governments have refused to make any serious effort to keep the cost of healthcare from spiralling out of control.
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Re: The new techdirt extremely annoying letterbox format
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Thanks for the tip PaulT. I did not know about that. I haven't looked at those in a long time.
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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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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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Re: Re: The new techdirt extremely annoying letterbox format
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 :)
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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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Re: Re: Re: The new techdirt extremely annoying letterbox format
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.
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Are genomic data unequivocally owned by individuals?
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Re: Re: Re: Re: The new techdirt extremely annoying letterbox format
Yah - we agree on that wholeheartedly. That's the #1 thing we are looking into.
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Re: Are genomic data unequivocally owned by individuals?
What will we do about these people?
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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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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.
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