The New York Times and the BBC are reporting on the largest, human whole-genome DNA sequencing project ever performed on a single population. The research results, entitled "Large-scale whole-genome sequencing of the Icelandic population" was published on March 25, 2015 in the journal Nature Genetics .
From The New York Times article:
Scientists in Iceland have produced an unprecedented snapshot of a nation’s genetic makeup, discovering a host of previously unknown gene mutations that may play roles in ailments as diverse as Alzheimer’s disease, heart disease and gallstones.
[...]In a series of papers published on Wednesday in the journal Nature Genetics, researchers at Decode Genetics, an Icelandic genetics firm owned by Amgen, described sequencing the genomes — the complete DNA — of 2,636 Icelanders, the largest collection ever analyzed in a single human population.
With this trove of genetic information, the scientists were able to accurately infer the genomes of more than 100,000 other Icelanders, or almost a third of the entire country.
[More after the break.]
The BBC coverage notes:
The team say they could now find every woman at high-risk of breast cancer "at the touch of a button" and it would be "criminal" not to use the information.
The reports … used the data to make a suite of discoveries including the age of the last common ancestor of men.
DNA is passed from one generation to the next. If you knew everything about the DNA of a child and their grandparents, you could figure out a lot about about the DNA of the parents too.
The potential medical benefits of such large-scale genome sequencing projects in identifying the genetic basis of a variety of diseases is huge, as is the promise of other medical and scientific advancements in a variety of areas.
At the same time, bio-ethicists are calling for better privacy protection, informed consent and restrictions on access to personally-identifying information associated with whole genome sequencing data.
When do the potential benefits of such research outweigh individual privacy concerns? How can we best protect the privacy of individuals and move such research forward?
(Score: 2) by VLM on Monday March 30 2015, @01:52PM
With this trove of genetic information, the scientists were able to accurately infer the genomes of more than 100,000 other Icelanders, or almost a third of the entire country.
I wonder when it'll be made public (intentionally or otherwise) I bet there's interesting genealogical data in there. Aside from the obvious "Worlds biggest Maury paternity test reveal"
Iceland is pretty cool. I looked into working there for a couple hours some time ago. Hard to immigrate without learning their language and its not exactly a popular language thus hard to learn. Not much IT/CS type of work, very thin on the ground, I'd have to remote. If I could find the politics / culture of iceland with the climate of a tropical isle I'd be there in a flash (or just wait for global warming to hit hard enough...)
The climate in Iceland is very strange, based on my research. Something like 50% of the population lives in the southern capital where it never freezes and never gets above 50F, its basically like living in my fridge year around, which sounds bizarre but I like that kind of weather. The north is where it goes all santa claus in the winter. And there's a giant desert / swamp / wasteland in the middle of the country where basically no one lives, which is pretty crazy, and 4x4 owners drive across the empty center of the country in the summer for fun. Hope you like to eat fish or make enough dough for imported fruit because only like one percent of the island is farms. Believe it or not, the ring highway connecting all the settlements around the perimeter of the country is less than a generation old, plenty of old folks remember when the only way to go from settlement to settlement was dirt roads at best, or boat. They have a stronger recreational boat culture than most of the USA.
They Fed the bankers in '08 so their economy took a slightly deeper hit than everyone else for about a year, but it's been (relatively) booming since then, whereas everyone else is still stumbling around in the great recession, so its a good place to live if you can tolerate the climate and can arrange work.
(Score: -1, Troll) by Anonymous Coward on Monday March 30 2015, @02:11PM
Why do you have to be the first post in every article, and then run your mouth acting like a know-it-all, when in fact you have no idea what you are talking about?
(Score: 2) by janrinok on Monday March 30 2015, @03:03PM
Temperatures very rarely drop below −15 °C (5 °F) in the winter. This is because the Icelandic coastal weather in winter is moderated by the warm waters of the Gulf Stream. The climate is subpolar oceanic (Koppen: Cfc ), and the city is on the northern edge of the temperate zone. The city's coastal location does make it prone to wind, however, and gales are common in winter. Summers are cool, with temperatures fluctuating between 10 and 15 °C (50 and 59 °F), sometimes exceeding 20 °C (68 °F). [wikipedia.org]
(Score: 2) by janrinok on Monday March 30 2015, @03:06PM
Damn - pressed the wrong button. Link valid but poorly displayed. Going to stand in the corner....
(Score: 2) by kaszz on Monday March 30 2015, @08:59PM
Humidity will have a huge impact on how cold it will feel like. Low temperature and high humidity will make that low temperature sneak inside your clothes. Then consider that the oceans around will likely provide this humidity and on top of that wind. Buy proper clothes or freeze..
(Score: 0) by Anonymous Coward on Tuesday March 31 2015, @02:17AM
Actually, Iceland Is The Most Civilized Country [commondreams.org]
[1] ...and a thriving hunting culture.
.
the bankers
Yup. One of my favorite links:
Financial Collapse and the Icelandic Solution [googleusercontent.com] (orig) [dissidentvoice.org]
Tell your incompetent Capitalists to pound sand; don't bail out failures.
.
From the update/correction by janrinok, below
rarely drop below −15 °C (5 °F) in the winter [...] Summers [...] sometimes exceeding 20 °C (68 °F).
Sadly, my blood is too thick to deal with that.
-- gewg_
(Score: 3, Interesting) by sudo rm -rf on Monday March 30 2015, @02:02PM
Q:
When do the potential benefits of such research outweigh individual privacy concerns?
A: Never.
Let each individual choose. If anyone wants to know if he/she is at high-risk of any illness, then provide the answer only by request. And only to the requester. Medicine's first and foremost prupose is to ease ailments and never to harm (e.g. by indirectly raising the patient's insurance fee).
Relevant quote:
Whatever, in the course of my practice, I may see or hear (even when not invited), whatever I may happen to obtain knowledge of, if it be not proper to repeat it, I will keep sacred and secret within my own breast.
(Hippocratic Oath [wikipedia.org])
(Score: 2) by Gravis on Monday March 30 2015, @02:31PM
Q: When do the potential benefits of such research outweigh individual privacy concerns?
it depends on how dire the situation. would you care about someone's privacy if they were withholding the cure to cancer?
A: Never.
Let each individual choose. If anyone wants to know if he/she is at high-risk of any illness, then provide the answer only by request.
only a fool wouldn't want to know about something they can do something about.
Medicine's first and foremost prupose is to ease ailments and never to harm (e.g. by indirectly raising the patient's insurance fee).
Relevant quote:
Whatever, in the course of my practice, I may see or hear (even when not invited), whatever I may happen to obtain knowledge of, if it be not proper to repeat it, I will keep sacred and secret within my own breast.
(Hippocratic Oath)
that is for medical practitioners, these are scientists.
(Score: 2) by sudo rm -rf on Monday March 30 2015, @03:55PM
If the fool chooses ignorance, it is fine by me. In case I wasn't clear, my point was that personalized data belongs in the hands of the person in question. As in the quoted BBC article: "The team say they could now find every woman at high-risk of breast cancer "at the touch of a button" and it would be "criminal" not to use the information", I like to add it would be criminal to use the data without consent. If a woman raises the question and it can be answered with the "push of a button", then fine, good job, scientists. Just don't decide what is good for other people in your (i.e. the scientists) opinion.
(Score: 2) by VLM on Monday March 30 2015, @04:45PM
If a woman raises the question and it can be answered with the "push of a button"
But how do you work something like that in practice, at a checkup. Does anyone go to the doc for a checkup every decade or so and provide the doc with some long legal disclaimer as a requirement "So doc you got any advice for me based on my history and tests and symptoms but but first here is a long legal disclaimer about how I forbid to to discuss certain genetic risk topics"?
(Score: 2) by kaszz on Monday March 30 2015, @09:02PM
Perhaps if there's good treatment to be had the person at risk may be informed? Thus if the risk isn't clear or there's nothing to do about what has been found. Let it be?
(Score: 3, Interesting) by NotSanguine on Monday March 30 2015, @05:06PM
Q:
When do the potential benefits of such research outweigh individual privacy concerns?
A: Never.
Let each individual choose. If anyone wants to know if he/she is at high-risk of any illness, then provide the answer only by request. And only to the requester. Medicine's first and foremost prupose is to ease ailments and never to harm (e.g. by indirectly raising the patient's insurance fee).
I think the answer is a bit more complex than that. Which is why I posed the question in the first place. Maybe more than just a bit.
Given that large-scale (encompassing thousands, or even hundreds of thousands, of people) whole genome sequence analysis, coupled with public and individual health data, lifestyle information and environmental factors would/will likely result in remarkable breakthroughs in the medical and health sciences as well as an expansion of knowledge in more esoteric fields such as evolutionary biology and anthropology.
As such, the issue is less about your family doctor selling your medical information to data aggregators; it's more about
1. Securing genome sequences, scientifically useful supporting data and personally identifying information in ways that allow research to continue without compromising the privacy (and potentially, the safety) of those associated with that data;
2. Ensuring that the donors of DNA and other information for such research are aware of how their data will be used and who will have access to it;
3. Identifying and implementing the means to do (1) and (2) in a way that doesn't compromise privacy, but still allows researchers to utilize the data effectively.
Yes, each individual should have the right to decide for themselves if they want to learn about their genetic background, or to have their data used for research purposes. At the same time, without such research we won't be able to effectively address many diseases and defects that harm or even kill many of us today.
No, no, you're not thinking; you're just being logical. --Niels Bohr
(Score: 2) by kaszz on Monday March 30 2015, @09:10PM
Iceland has a universal health care system. Thus it won't affect the economy of an individual. However information like this might impact medical decisions.