UK plans to gene sequence newborn babies

[ocpaul20]

Plans for the National Health Service to sequence the DNA of every baby born in the UK, starting with a pilot scheme of 20,000 children, were announced by health minister Matt Hancock this week. It sounds like the UK is leading the way in high-tech healthcare – but doctors are saying the idea is ethically questionable.

...
No details are available about the UK plans and Hancock didn’t respond to New Scientist’s requests for comment. But introducing sequencing for everyone is a massive step. It will require public consultation over the ethical questions – not to mention on practical issues like how the data will be stored securely and the impact on doctors’ workloads,

Link to New Scientists article Nov 2019

A US group has begun a small trial of routine genome sequencing of healthy babies. The families are being monitored to see how they cope and to measure any harms and benefits.

China is supposed to be altering genes in babies already and other countries do tests to find hereditory diseases for those at risk, so it is only a few years away before we allow gene sequencing at birth.

With that, the insurance companies will want full disclosure of this information and the potential diseases will affect the premiums significantly. So, we will have a more pronounced 2-tier system based on those who can afford insurance and those who cannot. Those who have potential diseases will not be able to get private life, health, pensions insurance because it is so expensive. Then all the government has to do is to abolish any programs they have for the poor (NHS, health insurance, etc) and those people will be weeded out of society. Companies will ask to see this information too. They may pay for insurance like they do now, but the hold they have on us will be greater and it will be a reason to not hire anyone who has a degerative disease. Very soon, the rich will be able to pay for clones and designer babies without serious diseases.

[Gwynbleidd]

29 minutes ago, ocpaul20 said:

Very soon, the rich will be able to pay for clones and designer babies without serious diseases.

I wouldn't be the least bit surprised if they haven't been doing this already tbh.  

30 minutes ago, ocpaul20 said:

but doctors are saying the idea is ethically questionable.

I agree.  It's extremely questionable. 

[Farmer77]

45 minutes ago, ocpaul20 said:

China is supposed to be altering genes in babies already and other countries do tests to find hereditory diseases for those at risk, so it is only a few years away before we allow gene sequencing at birth.

I definitely understand the potential risks and moral conundrums of such technologies and practices, but , as someone with a painful and at times humiliating chronic disease I think it would be a travesty if we as a species didnt figure out how to properly use the technology.

 

[Rlyeh]

52 minutes ago, ocpaul20 said:

Very soon, the rich will be able to pay for clones and designer babies without serious diseases.

What good is a clone going to do?

If we have the technology to remove genetic diseases we should use it.

 

[ocpaul20]

What was that film that 'grew' clones for the rich to use for spare parts? Thats the kind of thing we risk.

Quote

I definitely understand the potential risks and moral conundrums of such technologies and practices, but , as someone with a painful and at times humiliating chronic disease I think it would be a travesty if we as a species didnt figure out how to properly use the technology.

It is not the technology but the route we as humans take when we use or develop it. I can imagine all kinds of dark deeds coming from this technology. If some governments will use humans to test to destruction, I can very easily see this technology being used in a similar way by the military, science, etc. If we do not reject it then we will have to live with it in some form or another.

I do not think we can stop this being put into practice and I do not think we can effectively police its use either. The Brave New World is just around the corner, and we have to decide how we will use new technologies coming out of our scientific advances.

I think the problem is this technology can be used for so muuch more (both 'bad' and 'good') than just removing genetic diseases.

Edited November 14, 2019 by ocpaul20

[Rlyeh]

1 hour ago, ocpaul20 said:

What was that film that 'grew' clones for the rich to use for spare parts? Thats the kind of thing we risk.

The Island.  If you've been living in a cave since 2005, I could understand why you'd think it's realistic.

But maybe none of this is real and we're in a computer because you saw that in a movie too?

 

[Duke Wellington]

4 hours ago, ocpaul20 said:

Link to New Scientists article Nov 2019

China is supposed to be altering genes in babies already and other countries do tests to find hereditory diseases for those at risk, so it is only a few years away before we allow gene sequencing at birth.

With that, the insurance companies will want full disclosure of this information and the potential diseases will affect the premiums significantly. So, we will have a more pronounced 2-tier system based on those who can afford insurance and those who cannot. Those who have potential diseases will not be able to get private life, health, pensions insurance because it is so expensive. Then all the government has to do is to abolish any programs they have for the poor (NHS, health insurance, etc) and those people will be weeded out of society. Companies will ask to see this information too. They may pay for insurance like they do now, but the hold they have on us will be greater and it will be a reason to not hire anyone who has a degerative disease. Very soon, the rich will be able to pay for clones and designer babies without serious diseases.

I`m all for the NHS altering genes which lead to poor quality of life (inherited diseases, and mutations) and those which cause mental illness along with criminal behaviour.

[L.A.T.1961]

Gene sequencing is not gene therapy, which can treat illness, or gene modification. It is only looking at the DNA of an individual.

The risk is that personal information is distributed outside the NHS and used to generate cash, or for other purposes, when it is supposed to be for medical research. If this is introduced then it needs to come with a guarantee that automatic gene data collection will only be used for its original purpose. 

https://www.bbc.co.uk/news/uk-47013914  

https://www.independent.co.uk/news/world/americas/dna-testing-fbi-data-breach-privacy-family-tree-bennett-greenspan-a8763521.html

[Duke Wellington]

2 hours ago, L.A.T.1961 said:

Gene sequencing is not gene therapy, which can treat illness, or gene modification. It is only looking at the DNA of an individual.

The risk is that personal information is distributed outside the NHS and used to generate cash, or for other purposes, when it is supposed to be for medical research. If this is introduced then it needs to come with a guarantee that automatic gene data collection will only be used for its original purpose. 

https://www.bbc.co.uk/news/uk-47013914  

https://www.independent.co.uk/news/world/americas/dna-testing-fbi-data-breach-privacy-family-tree-bennett-greenspan-a8763521.html

I`m not against our DNA data being sold for profit so long as the individuals it comes from remain anonymous.

After all, we want the private sector involved in creating new gene therapies and conducting research to create drugs tailored to specific individuals. Take chemotherapy as an example. Right now people get injected with the drugs designed to kill their type of cancer with no actual knowledge if it will work on someone with their DNA profile. DNA analysis allows medicine tailored to the individual.

[Golden Duck]

9 hours ago, L.A.T.1961 said:

Gene sequencing is not gene therapy, which can treat illness, or gene modification. It is only looking at the DNA of an individual.

The risk is that personal information is distributed outside the NHS and used to generate cash, or for other purposes, when it is supposed to be for medical research. If this is introduced then it needs to come with a guarantee that automatic gene data collection will only be used for its original purpose. 

https://www.bbc.co.uk/news/uk-47013914  

https://www.independent.co.uk/news/world/americas/dna-testing-fbi-data-breach-privacy-family-tree-bennett-greenspan-a8763521.html

It could be used for pricing health insurance premiums.

[L.A.T.1961]

18 minutes ago, Golden Duck said:

It could be used for pricing health insurance premiums.

In the UK that is not such a big problem as many are treated by the NHS but in other countries around the world it could be an issue.

Once the idea of DNA testing becomes commonplace it might become mandatory before health insurance is provided.

The only thing stopping it at the moment is the capacity to do large numbers of tests.  

 

[Golden Duck]

2 minutes ago, L.A.T.1961 said:

In the UK that is not such a big problem as many are treated by the NHS but in other countries around the world it could be an issue.

Once the idea of DNA testing becomes commonplace it might become mandatory before health insurance is provided.

The only thing stopping it at the moment is the capacity to do large numbers of tests.  

 

Life insurance is still reasonably big isn't it?

[L.A.T.1961]

13 minutes ago, Golden Duck said:

Life insurance is still reasonably big isn't it?

Life insurance was required for a mortgage for many years, it probably still is, so many would be affected by that.

Also pension schemes could have premiums based on health.