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You are in Human Genetics → Genes and the NHS → Babies' blood spots

Babies' blood spots

The Sunday Times [subscription needed] has exposed that some hospitals are storing millions of babies blood spots for 18 or more years. Originally taken to perform useful health tests at birth, the blood spots could be misused in future to sequence the genome of every baby, as was proposed by the Labour Government in 2003.

The blood spots need to be taken to do important medical tests. Keeping them for a limited time is also useful to check and improve the screening programme. However, there is a danger of misuse if the samples are stored indefinitely, especially if parents and children are unaware of this.

Resources

• GeneWatch briefings
  • Briefing 27:Bar-Coding Babies: Good for Health? 31st July 2004
• External links
  • Hastings Center: Sequencing Newborns (August 2018)

  • Public Health England: Newborn blood spot screening: FAQs

  • NHS Screening Programmes: Addendums to Guidelines for Newborn Blood Spot Sampling (February 2015)

  • NHS England: Screening tests for you and your baby (November 2014)

  • Scottish Government: Guthrie Cards in Scotland: Ethical, Legal and Social Issues (13th January 2014)

  • NHS Screening Programmes: Guidelines for Newborn Blood Spot Sampling (February 2012)

  • Human Genetics Commission: Profiling the newborn: a prospective gene technology? (March 2005)

  • UK Newborn Screening Programme Centre: UK Code of Practice for the Retention and Storage of Residual Spots (2005)

• Press articles
  • Science Daily: Should all babies have their genomes sequenced? (15th August 2018)

  • CBS Sacramento: California Newborn DNA Database Shocks Parents (14th May 2018)

  • WVNSTV: DNA of every baby born in California is stored - Who has access to it? (14th May 2018)

  • WND: Feds plan to take ownership of your baby's DNA (14th May 2018)

  • Nuffield Council on Bioethics: Whole genome sequencing of babies (March 2018)

  • Patch: Newborn DNA Blood Spots Stored and Sold (27th November 2015)

  • CBS: DNA Data From California Newborn Blood Samples Stored, Sold To 3rd Parties (9th November 2015)

  • Buzz Feed News: Most Parents Don’t Know Their Babies’ Blood Is Given To Scientists - But That May Change (17th March 2015)

  • WNCN: Government storing baby blood data raises privacy concerns (17th November 2014)

  • The Courier: Database of newborns' DNA samples could be destroyed (27th January 2014)

  • Health Direct: NHS uses babies' blood DNA for secret database (26th May 2010)

  • Daily Mail: DNA from millions of newborn babies is secretly stored on NHS database (24th May 2010)

  • The Sunday Times: NHS uses babies' blood for secret database (23rd May 2010)

    Subscription needed

  • The Times: Genetic mapping of babies by 2019 will transform preventive medicine (9th February 2009)

• Press releases
  • GeneWatch PR: GeneWatch UK welcomes rejection of "bar-coding babies" plan. 30th March 2005
• Consultation responses
  • Blood Spots From Newborn Babies: Consultation Response 31st January 2006

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Resources

• GeneWatch briefings
• External links
• Press articles
• Press releases
• Consultation responses