Ethical questions surround the NHS sampling babies’ DNA | Letter

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"NHS Plans DNA Testing for Newborns Raises Ethical Concerns"

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The NHS is planning to implement a program that involves DNA testing for all newborns in England, aimed at assessing their risk for various diseases. This initiative follows the sampling of DNA from 100,000 babies and is expected to integrate artificial intelligence (AI) to enhance preventive measures and expedite diagnosis. The Department of Health and Social Care has expressed that the combination of genomics and AI will significantly transform healthcare by offering early warnings about potential health issues. However, this approach has raised significant ethical concerns regarding the consent and privacy of infants, whose biological data would be collected without their ability to consent.

Critics argue that the potential uses of this genetic data extend beyond mere disease prediction, raising fears about its utilization in drug testing and vaccine development. There is a particular emphasis on the ethical implications of conducting research on children, especially when there are no immediate benefits for them. The letter also highlights the burgeoning global genomics market, estimated at $32.65 billion, indicating that the commercialization of genetic data could lead to exploitation. Furthermore, the association of AI with genetic data collection raises alarms about privacy and surveillance, suggesting a future where biometric and genomic information could be linked to digital identities. The letter calls for a critical examination of whether healthcare providers will adequately inform parents about these risks and the potential consequences of this technology-driven approach to healthcare.

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Re your report (All babies in England to get DNA test to assess risk of diseases within 10 years, 20 June), the NHS plans to test the DNA of all babies to “assess disease risk”, in association with AI, having already sampled 100,000 newborns. The Department of Health and Social Care said that genomics and AI would be used to “revolutionise prevention” and provide faster diagnoses and an “early warning signal for disease”.

In line withprevious predictions, when individuals who submitted to a PCR test (which amplifies genetic material) during Covid-19 had their DNA sold for profit without their consent, infants now face their private, personal, biological data being captured, stored and used by who-knows-what corporations on behalf of the NHS.

Not everyone wants to know what potential diseases they might suffer from in the future, especially if there is no known treatment. And for what purposes might it be used, other than “prediction of disease risk”? Testing of new drugs? Testing of vaccines? Clearly an infant cannot give consent to its DNA being used for these purposes and research on children isunethical unless they stand to benefit. Will parents have the opportunity to give informed consent and can it even be informed if they are unaware of the many potential uses of the material?

A globalgenomics marketof $32.65bn in 2023 suggests that this is big business.Genomics England already makes available patients’ genomic datato businesses.

The association with AI additionally raises the spectre of surveillance in the form of digital IDs, incorporating not only biometric data, such as fingerprints, retinal scans and facial recognition, but potentially even the human genome itself. The NHSdata of 57 million patientshas already been used to train AI outside of the intended purpose.

Will doctors recognise these risks and take steps to inform patients? Or will technology roll on regardless?Janet MenageRetired GP, Llanybydder, Ceredigion

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Source: The Guardian