Scientists Raise Concerns Over Baby Genome Sequencing Plan (theguardian.com) 66
Scientists have raised concerns about a proposed overhaul of newborn screening that could lead to the UK becoming the first country to offer whole-genome sequencing for every baby. From a report: Speaking before the publication of plans for an NHS pilot study in which up to 200,000 babies' genomes will be sequenced and analysed, scientists suggested the initiative appeared designed to create a valuable health dataset rather than an effective method of improving the diagnosis of rare diseases. Anneke Lucassen, director of the Centre for Personalised Medicine at the University of Oxford, said that if the primary objective were improving newborn screening, there were alternative, more targeted tests that would be cheaper and potentially more reliable.
"If it was really all about [diagnosing more conditions], you could do that through other means," she said. "It's about helping to build the genomics industry in the UK and it's about creating a research resource so we can study people as they grow older." Lucassen said she was not opposed to the pilot, or even necessarily to these objectives, but wanted more transparency, "because otherwise it's sold as something that is not the full picture. The public needs to know that," she added. Sequencing the genomes of all newborns would represent a hugely ambitious upgrade to the routine "heel prick" test that all babies receive at about five days to detect nine serious health conditions including cystic fibrosis, sickle cell disease and various metabolic diseases.
"If it was really all about [diagnosing more conditions], you could do that through other means," she said. "It's about helping to build the genomics industry in the UK and it's about creating a research resource so we can study people as they grow older." Lucassen said she was not opposed to the pilot, or even necessarily to these objectives, but wanted more transparency, "because otherwise it's sold as something that is not the full picture. The public needs to know that," she added. Sequencing the genomes of all newborns would represent a hugely ambitious upgrade to the routine "heel prick" test that all babies receive at about five days to detect nine serious health conditions including cystic fibrosis, sickle cell disease and various metabolic diseases.
privacy for the newborn? (Score:5, Insightful)
Better question: Do we want this? (Score:3, Interesting)
That's not even the problem. As a newborn, your parents make more or less all the decisions and for them you have zero privacy. That only comes with aging. Of course, you can ask whether anyone besides your parents ought to have that sort of insight, or even better.
But the real problem comes only later, when you are old enough and you find that you can never have your privacy back because it's been taken away at birth.
And that's before considering that this sort of data heap gets routinely repurposed. Lik
Re: Better question: Do we want this? (Score:1)
Re: Better question: Do we want this? (Score:2)
Re: Better question: Do we want this? (Score:2)
Seriously? If you kill someone you void your right to privacy or anything else except maybe extreme torture. ... but not if the kid is forced to wait until age 18 when all the damage is done. It is BS that targeted screening is good enough. There are thousands of rare genetic diseases that targeted screening would miss.
Also, most people would rather be cured of some debilitating disease than to not allow their genome to be sequenced. With gene editing technology, many genetic diseases will be fixable
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First off, genetic privacy is almost impossible to enforce without a police state apparatus. Second, kids don't have the right to genetic privacy from their own parents. Third, it is impossible to enforce genetic privacy without infringing on the rights of a person to sequence themselves for the purpose of health, geneological/ancestry curiosity, and fun. It means that if my relative wants genetic privacy, I can't sequence myself because that would reveal a large percent of his genetics and ancestry too. Al
Re: privacy for the newborn? (Score:1)
Imagine leaving detailed instructions everywhere you go for how something is built, including all the parts required to keep it running.
Can that ever be considered private?
We leave all our DNA anywhere that has skin cells, hair, or blood. Basically anywhere we go is likely to have something of ours. Dust is like 98% human skin.
It's only useful when we tie that to an outcome. A disease or pattern (people with X seem to be really strong). Otherwise it's just like a fingerprint... Often a good way to match ide
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DNA is not private. Everyone is shedding DNA left and right.
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If I play a copyrighted song in the town square it might be there for all to see and hear but it is not within their right to record it. One's DNA is their property by right and that is an innate fact which cannot and should not be waivable.
Re: privacy for the newborn? (Score:2)
It can be considered private the same as if you drop your business card all over the place and then get angry that people know your number.
No and neither do you (Score:3)
Your DNA is littered all over the place carelessly every day. You can't keep it secret and it only becomes cheaper and easier to process your DNA from the millions of samples you leave behind every day.
Your biometrics don't belong to you, not in a simple way, you have likeness usage regulations but then you also have law enforcement completely able to fingerprint you or scan any biometric. The regulations haven't been created to handle the future uses; an employer could get your DNA easily and scan for gene
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The difference between "Your DNA is littered all over the place.." and this, is the former is anonymous and commingled with everyone else's DNA. This is identification. There is a laboratory ensured high-quality trusted chain from sample to sequence that the sequence belongs to the person sampled.
The former is "your apart of the human species" - the latter is "You're unfit for society." to be cast out of Sparta. Not too far of a stretch to go from DNA profiling to fitness profiling.
Re: No and neither do you (Score:1)
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No but someone leaking it to the government is. Yeah facebook sucks but not government level sucks.
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To be fair, a lot of people believe in the US argue vehemently that a newborn (minus about 30 seconds) doesn't even have a 'right' to be alive.
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Even though they are very much in opposition to not just religion but also to science on this topic virtually nobody countering them could manage to just present the very obvious secular logic fails in their reasoning, they just can't help invoking religion. Or I should say could present. They 'okay boomer' in a sweeping mass
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The fact that you're utterly full of it does spring to mind. Along with the fact that it's the religious who tune out everyone else. You have no idea what the agenda of the pro-choice people is because you don't listen. If you did, you'd have realized a long time ago that they're not this unified bloc. But, no, you blame them for the very things you do in the name of your God. (Except, of course, that if your God did indeed exist, He/She/It would be telling you that you weren't speaking for them, only for y
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That's a fact is it? With what instrument did you gather that reading?
"Along with the fact that it's the religious who tune out everyone else."
Right it's just them who tunes out everyone else. Like how not a single thing you said actually makes sense as a response to my position.
"You have no idea what the agenda of the pro-choice people is because you don't listen. If you did, you'd have realized a long time ago that they're not this unified bloc
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I believe you'll find that pro-choice activists have a more reasonable limit than 30 seconds. However, actually listening to those you despise would violate the first principle of the religious - ignore anything that contradicts your beliefs.
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Some don't even that that.
There are plenty of such procedures performed on fetuses that are past the point of viability.
Ergo, there's something 'magic' that must be regarded as happening when one passes the labial gates: once it's out in the light, it's murder. While it's in the shade of the vagina - do what you want.
Doesn't that seem faintly arbitrary?
https://www.nationalreview.com... [nationalreview.com]
"...Abortion-rights supporters often like to claim that abortions after 20 weeksâ(TM) gestation are rare. According to
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Ok, I doubt your numbers for a start. National Review is read poor due to misleading information and factual errors.
Those numbers also don't consider health emergencies that may make alternatives impossible. But, of course, that's not convenient to consider, is it?
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Privacy is not usually a barrier to treating children and infants. I guess the question is, is sequencing their genome in their best interest?
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Shit, they don't even have the right to be born.
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If it is a Jewish or Muslim boy, he won't have the privacy
of the end of his dick, regardless of what he will
want when an adult.
Dirty secret (Score:3)
A major downside of this project would be if it delays the UK adding other conditions to its newborn screening. The UK screens for far fewer conditions than are covered in the U.S., and delaying moving forward with screening of these conditions to wait for some future genetic study to be completed would be a mistake.
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We have been assured that the slippery slope argument is a fallacy at each of these steps for decades but looking back up from the curre
Medical industry (Score:2)
No, just no (Score:4, Insightful)
You don’t have the right to profit off my kid’s DNA - nor my own, for that matter.
yes we do did you read all 500 pages of the EULA f (Score:3)
yes we do did you read all 500 pages of the EULA that this dockers office has on it's website?
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All parents have to pay the Fisher Price for their children.
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You don't have the right to profit off my kid's DNA - nor my own, for that matter.
While you're right from a monetary standpoint. The UK's NHS is their National Health Service (universal healthcare) and this pilot study is being done by them. It doesn't seem they'd be profiting monetarily so much as the system and people they serve (everyone) may profit, as in benefit, from the knowledge gained (if any) about individuals specifically and the population in general.
In some places, like the US before the Affordable Healthcare ACT, this knowledge might constitute a "pre-existing" conditi
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The 2008 Genetic Nondiscrimination Act prohibits discrimination based on genetics for insurance and employment. It passed the senate 95-0 and the house 416-1. It was signed into law by George Bush.
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The 2008 Genetic Nondiscrimination Act prohibits discrimination based on genetics for insurance and employment. It passed the senate 95-0 and the house 416-1. It was signed into law by George Bush.
As I mentioned in another reply, thanks for the info! However, the Wikipedia article on this [wikipedia.org] notes:
The law does not cover life, disability, or long-term care insurance, which may cause some reluctance to get tested.
And (a) Ron Paul was the lone dissenter in the House and (b) Republicans tried to reduce protections in 2017 with the "Preserving Employee Wellness Programs Act" noting:
Employers would have been able to demand workers' genetic test results if the bill were to have been enacted.
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The Republicans did not fully repeal Obamacare because it has too many provisions that people like.
Well... they couldn't get the votes to repeal it, but they certainly would have otherwise -- popular provisions or not. To be fair, they did pinky-swear to replace the ACA with something even better, more beautiful and way less expensive that would cover everyone -- really, really soon -- although it'll have to remain a secret until then (even now). /sarcasm
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They tried, the opposition refused to collaborate on this as well as every other issue. Because Trump. And if they refused to even sit at the table to hash something out they could just do what they did here and use the failure they caused as a talking point against the other side.
Re: No, just no (Score:2)
Be reasonable. The Republicans never had a plan. They were the ones who walked out when the ACA was first formulated and added most of the objectionable amendments to it. If they had a plan, they would have offered it. They didn't.
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Trump went into office with no real opinions on much of anything and a complete desire to be seen as amazing and fixing everything. The Republicans had all their political capital tied up with cooperating with him... as demonstrated now where his detractors in both parties are at serious risk of turnover.
He had a few idea
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Trump went in with the purpose of plundering American finances and wrecking the nation. That was his plan and he succeeded.
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Right in general. They have no right to the information or to any potential use enabled by having collected it. The last people who have a right (or any ethical ability to access even with consent) a citizens genetic and health information are the agents of the state.
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Best make sure all the findings are published then. Everyone profits if this leads to improvements in healthcare.
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I really hope this is how it works out. When information is freely given, we all benefit.
However, if a way to make a boat load of money is found, what self-respecting for-profit company will not sell the souls of children to make a bundle.. and keep the secrets found very closely guarded by rabbid lawyers.
Re: No, just no (Score:1)
So you don't want to help others because someone MIGHT profit from it?
What if all information was only shared like open source? Free if you also share anything derived from it in the same way. Then any treatments or tests should be available near the cost of performing them.
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Re: No, just no (Score:2)
You'd get the same effect by passing a constitutional amendment that matched the EU's privacy laws, since that would make all DNA data anonymous. The NIH could then do research to benefit health without imposing privacy risks.
Re:No, just no (Score:4, Interesting)
Besides, why the hell do you care about your genome data? UK privacy laws protect the individual so they have to anonymize it, but absolutely allow for population-level and demographic level health information, which at this volume it is.
This knee-jerk reaction to privacy belies common sense.
Re: No, just no (Score:2)
Re: No, just no (Score:2)
Well, since Britain left the EU, the govt has planned to abolish most of the privacy and safety regulations in the name of better business with the US. So although what you're saying is true, I wouldn't rely on that as long as The Great Turnip is in power.
Why in the world (Score:4, Funny)
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A better, more informative article for the program is available here: https://www.genomicsengland.co.uk/newborn-sequencing/ [genomicsengland.co.uk]
Because it builds character (Score:4, Funny)
As a manufacture of tiny lab coats, I am in full support of this vital program to keep lazy babies from getting a free ride in life.
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True, we can't have lazy babies.
When I was a baby, I had to sequence my own DNA by walking each base-pair up a hill, in the snow, with only a diaper on.
It's as easy as ABC or ACGT in this case.
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They only need to learn 4 letters of the alphabet. It's so easy.. a child can do it!
I had to say it... (Score:2)
All your Base Pairs are belong to us.
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I couldn't help it. It just popped in there.
GDPR (Score:2)
How does this play into the GDPR!?
Oh wait, Brexit, that's right...
Been there done that (Score:1)
Re: Been there done that (Score:2)
But is the genomic data tied to the individual or is it anonymised properly according to standard protocols?
flip the problem (Score:2)
Seems best to flip this problem around and sequence people that are at the end of their life. You have the genome plus medical history at once, and you are left with fewer privacy/personal issues as the dead can't complain.
Maybe good... but definitely bad (Score:2)
It is possible this could be a resource used for good.
It is a certainty that it will be used to harm at some point.
How do you feel about the odds?