Genetic Data On 500,000 Volunteers In UK To Be Released For Scientific Study (theguardian.com) 18
An anonymous reader quotes a report from The Guardian: A new era of medical discoveries, treatments and cures is on the horizon, researchers say, following the announcement that an unprecedented trove of genetic information is to be made available to scientists. Health researchers from around the world can now apply to study the whole genomes of half a million people enrolled in UK Biobank, a biomedical research project that has compiled detailed health and lifestyle records on individuals since it began 20 years ago. The move on Thursday amounts to the largest number of whole-genome sequences ever released for medical research. The sequences will be used with UK Biobank's records and other data to delve deeply into the genetics of everything -- from people's risk of obesity, diabetes, heart disease, cancer and other conditions, to individuals' sleep and exercise patterns.
Researchers believe the new data will allow them to calculate people's individual risk scores for a raft of cancers and other diseases, and so work out who could benefit most from early screening. They should also gain a deeper understanding of serious genetic conditions such as Huntington's and motor neurone disease, which have often been studied in small numbers of severely affected patients. Health experts from academia, the government, industry and charities can apply for access though they have to be approved and study the genomes through a protected database stripped of identifying details such as names, addresses, birth dates, and GP information. "Until 2021 scientists could study only about 1% of the DNA of UK Biobank volunteers -- the fraction that encodes proteins," notes the report. "Since then, whole genomes have been released for 200,000 participants, but work continued to sequence all of the 500,000 volunteers."
"With that number of whole genomes in hand, researchers will be able to find much rarer genes which drive diseases, including those that behave like switches and turn other genes on and off."
Researchers believe the new data will allow them to calculate people's individual risk scores for a raft of cancers and other diseases, and so work out who could benefit most from early screening. They should also gain a deeper understanding of serious genetic conditions such as Huntington's and motor neurone disease, which have often been studied in small numbers of severely affected patients. Health experts from academia, the government, industry and charities can apply for access though they have to be approved and study the genomes through a protected database stripped of identifying details such as names, addresses, birth dates, and GP information. "Until 2021 scientists could study only about 1% of the DNA of UK Biobank volunteers -- the fraction that encodes proteins," notes the report. "Since then, whole genomes have been released for 200,000 participants, but work continued to sequence all of the 500,000 volunteers."
"With that number of whole genomes in hand, researchers will be able to find much rarer genes which drive diseases, including those that behave like switches and turn other genes on and off."
Insurance Scores (Score:3)
INb4 we get "insurance scores" where insurance companies demand DNA samples before we can get insurance, and then charge us differently based on our genomes.
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Since that 500k data represents over 1% of UK pop, that with be extrapolated to all the pop by family connection.
Consent? (Score:1)
What a shame the people who supplied this valuable data were led to believe their data would remain under lock and key, not sold on to the likes of health insurance companies.
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I gave my DNA to Ancestry as part of tracking down family members, and trying to prove that an ancestor actually was the Native American that they claimed to be. I also found a second cousin that none of my family knew about, and we managed to track down her missing father and where and when he died.
Ancestry keeps updating its data with
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The information is de-identified [ukbiobank.ac.uk]. All the researchers, not insurance companies, are getting is genetic and health information, not who it came from.
It's not de-identified [theguardian.com]. Doctors were asked to provide patient information to supplement the genetic data. And since BioBank repeatedly assured [theguardian.com] people their data would not be sold to insurance companies, and was later sold, how much faith do you put in any other BioBank promise?
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Participants provide informed consent and that very much includes being told, and tested that they understand, the details of how the data will be handled and used.
Re:Consent? (Score:4, Informative)
Participants provide informed consent and that very much includes being told, and tested that they understand, the details of how the data will be handled and used.
Actually, that's not true [theguardian.com]. BioBank assured people repeatedly the information was only for research use.
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It is true, read your article.
It appears people made some statements during the planning phase that were revised, and reflected as such in the informed consent. They may have misled the public, which is a problem, but the public does not provide informed consent. Participants were given their informed consent material. Here's a sample:
https://www.ukbiobank.ac.uk/me... [ukbiobank.ac.uk]
There is a statement "insurance companies and employers will not be given any individual’s information, samples or test results, and nor
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The data doesn't just get given away. There's a data transfer agreement with a lot of conditions. One of them is that you agree to destroy data for any ID specified. It happens from time to time, with the UK Biobank and other similar projects. An e-mail goes out with an ID for someone who has decided to withdraw, and all of the data holders delete those records.
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No, it's a contract. If you're going to be cynical about the force of contract law then don't sign up for a study. Also, don't ever go to a hospital, get a job, or really do anything.
If I were in charge of an insurance company I wouldn't want to have any of this kind of data on my establishment. It puts you at risk of audits, tonnes of compliance issues, you have to deal with ethics boards, and it likely doesn't do your business any good anyway. Much easier just to read the papers other people publish.
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Just because some people believe these company's lies, doesn't mean that everyone does.
Reality check (Score:2)
A new era of medical discoveries, treatments and cures is on the horizon, researchers say, following the announcement that an unprecedented trove of genetic information is to be made available to scientists.
The ethnostate-now crowd crack the champagne every time this happens; one step closer and they didn't have to lift a finger. And I'm sure the data security for this information is not like all those other databases that leak daily.
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These projects aren't like some company holding your credit card information. The link between the actual identity and the anonymized ID isn't needed very often. One project I was involved with kept it on paper, locked in a safe at a major hospital. REB insisted that only three people were authorized to even see it and it was never to leave the room.
"Volunteers" Likely Did Not Read Fine Print (Score:2)
"Anonymous" reader (Score:2)
An anonymous reader quotes a report from The Guardian
In this world of DNA and web tracking, *nobody* is anonymous any more.