Imagine being left with the knowledge you have a genetic predisposition of developing an incurable disease at some point in your future which probably will never happen. This baby is unable to give consent but his/her future is now marked going into adulthood. Who would not be looking for signs and symptoms of the disease with this knowledge in your head and living in dread at some point of being diagnosed with it. Who knows how this information will eventually be used, it could affect job prospects or even planning to buy a house or insurance maybe even moving to a different country could be an obstacle if they identify you as having a risk of developing a serious illness. There are too many possibilities of misusing this information.
We all know that this data is never secure. We also should know, our genes are not our destiny (with some exceptions). I had stage 4 melanoma 10 years ago - I know my risk of recurrence is greater than 50%. Its like a sword of damoclese hanging over your head. It takes huge mental resilience to live with that fact.
DNA analysis can have its uses, but this is going too far.
"an advance in medical care or an ethical minefield?"
Neither.
Blatant genetic datamining used to advance genetic modification.
Say no. The NHS has always been this datamining monster that hoovers up everything and won't take no for an answer. I got in a fight with them over them having access to my personal details for vaccine propaganda and they came up with mewling excuses the law gave them that right, I informed them I won't be updating my details when they inevitably change and their actions have consequences.
On the question of security: couldn't samples be anonymized from the point of blood sampling and the results be retrievable only by submitting another matching DNA sample provided with the consent of the baby's parents? Or, later by the adult child? By contrast, this testing if non-anonymized would clearly be an invasion of privacy and the question might become whether even the parents have the right to their child's DNA data. Further, do those parents have the right to medically treat the child based on the DNA results?... before the child might understand their predicament? In my view this government effort would constitute the chemical dissection of newborns.
HM Govt's Life Sciences Sector Plan, recently published, is relevant, see below.
The Ministerial Foreword shows photos of three Secretary's of State
Top is SoS Science, Innovation and Technology
Next SoS Business and Trade
and at the bottom of the pile SoS Health and Social Care
You have simply got to know your place in the Govt hierarchy, the test is nothing to do with benefit for the child - its all about innovation, new tech, and business driving the economy. SoS DHSC has the patients or guinea pigs and if he doesn't play ball Treasury will not increase his funding because the other two SoS will make sure it doesn't.
As always Health is not a Govt priority. I fully understand the issue, we need money in before we can spend it on health, but let's be honest and say so to the public!
This was being spruiked back in the 1990s when the human genome project was promising an end to all disease. What happened? They discovered they couldn’t in fact predict disease from your dna, and the ENCODE project kicked off research into epigenetic factors. Can the ENCODE data predict disease using its database? Nope. It’s too complex. Kind of like predicting long term climate change.
Pfizer has been established about 175 yrs and has not cured ANYTHING
Cancer research has taken billions£ in donations over decades and still not cured cancer
Do I have confidence in the medical profession using a babies dna for good purposes? Err no.
The possible abuses have no limits!
Sounds very sinister to me.
What are they going to do with the results?
Pump babies full of rubbish for a disease they think it might get?
Utter utter dystopia.
Imagine being left with the knowledge you have a genetic predisposition of developing an incurable disease at some point in your future which probably will never happen. This baby is unable to give consent but his/her future is now marked going into adulthood. Who would not be looking for signs and symptoms of the disease with this knowledge in your head and living in dread at some point of being diagnosed with it. Who knows how this information will eventually be used, it could affect job prospects or even planning to buy a house or insurance maybe even moving to a different country could be an obstacle if they identify you as having a risk of developing a serious illness. There are too many possibilities of misusing this information.
Do Not Consent. Do Not Comply.
We all know that this data is never secure. We also should know, our genes are not our destiny (with some exceptions). I had stage 4 melanoma 10 years ago - I know my risk of recurrence is greater than 50%. Its like a sword of damoclese hanging over your head. It takes huge mental resilience to live with that fact.
DNA analysis can have its uses, but this is going too far.
"an advance in medical care or an ethical minefield?"
Neither.
Blatant genetic datamining used to advance genetic modification.
Say no. The NHS has always been this datamining monster that hoovers up everything and won't take no for an answer. I got in a fight with them over them having access to my personal details for vaccine propaganda and they came up with mewling excuses the law gave them that right, I informed them I won't be updating my details when they inevitably change and their actions have consequences.
https://thedailybeagle.substack.com/p/what-does-the-nhs-uk-government-and
On the question of security: couldn't samples be anonymized from the point of blood sampling and the results be retrievable only by submitting another matching DNA sample provided with the consent of the baby's parents? Or, later by the adult child? By contrast, this testing if non-anonymized would clearly be an invasion of privacy and the question might become whether even the parents have the right to their child's DNA data. Further, do those parents have the right to medically treat the child based on the DNA results?... before the child might understand their predicament? In my view this government effort would constitute the chemical dissection of newborns.
HM Govt's Life Sciences Sector Plan, recently published, is relevant, see below.
The Ministerial Foreword shows photos of three Secretary's of State
Top is SoS Science, Innovation and Technology
Next SoS Business and Trade
and at the bottom of the pile SoS Health and Social Care
You have simply got to know your place in the Govt hierarchy, the test is nothing to do with benefit for the child - its all about innovation, new tech, and business driving the economy. SoS DHSC has the patients or guinea pigs and if he doesn't play ball Treasury will not increase his funding because the other two SoS will make sure it doesn't.
As always Health is not a Govt priority. I fully understand the issue, we need money in before we can spend it on health, but let's be honest and say so to the public!
https://acrobat.adobe.com/id/urn:aaid:sc:EU:cfc00573-258b-4a12-bd79-47c918cf55f2?viewer%21megaVerb=group-discover
Thank you for that link BRian, I will add it at the bottom of the article.
This was being spruiked back in the 1990s when the human genome project was promising an end to all disease. What happened? They discovered they couldn’t in fact predict disease from your dna, and the ENCODE project kicked off research into epigenetic factors. Can the ENCODE data predict disease using its database? Nope. It’s too complex. Kind of like predicting long term climate change.