Page URL: https://www.progress.org.uk/

This week at the Progress Educational Trust (7 December 2021)

The next free-to-attend online event held by the Progress Educational Trust (PET), taking place next week, will be 'Whole Genome Sequencing at Birth: Consenting Adults, Sequencing Babies'.

This event will be held on Wednesday 15 December 2021 from 5.30pm-7.30pm (GMT), and is produced by PET in partnership with Genomics England and its Newborn Genomes Programme. The Newborn Genomes Programme will explore – in an ethics-approved research pilot, due to be embedded in the NHS – whether and how whole genome sequencing might, in future, be offered routinely for newborn babies in the UK.

Speakers at the Progress Educational Trust's FREE-to-attend public event 'Whole Genome Sequencing at Birth: Consenting Adults, Sequencing Babies', being held online on Wednesday 15 December 2021 Next week's event will be chaired by Sarah Norcross (Director of PET)), with speakers including:

  • Amanda Pichini (Consultant Genetic Counsellor at Genomics England)

  • Dr Simon Ramsden (Chair of the Association for Clinical Genomic Science)

  • Waheeda Abbas (Midwifery Lead at the North West Genomic Medicine Service Alliance)

  • Professor Anneke Lucassen (Director of the University of Oxford's Centre for Personalised Medicine)

These speakers will explore questions including:

  • What information, and how much information, do parents need to be given before they can consent – meaningfully and effectively – to the sequencing of their newborn baby's genome?

  • How can such information be made accessible and comprehensible to all (or at least to as many people as possible)?

  • Where there might be uncertainty in genomic data, or in the meaning of such data, how should this uncertainty be communicated to parents?

  • Once a newborn baby's genome is sequenced and studied, what information about that genome should be shared with the baby's parents as a matter of course? Should parents then be able to request additional information?

  • How granular might consent be? For example, would parents be able to opt out from certain uses of their newborn baby's genomic data? Or would this be impracticable?

  • If parents decline the offer of whole genome sequencing for their newborn baby, what precisely should happen next?

Find out more, and register for your free place, here. If discussing the event on social media, please use the hashtag #GenomicsConversation

In other news, PET recently held its 2021 Annual Conference, which this year was entitled 'Reproducing Regulation: Who Regulates Fertility and How?'.

More than 250 attendees gathered to hear more than 20 world-leading experts discuss the law and regulation that govern reproductive medicine and research, and whether changes need to be made in light of recent scientific innovations and changing views of what constitutes a family.

Julia Chain (Chair of the Human Fertilisation and Embryology Authority) and Emma Barnett (presenter of Newsnight and Woman's Hour) The first presentation at the conference – by Julia Chain, Chair of UK fertility regulator the Human Fertilisation and Embryology Authority – has been the subject of coverage in the print and broadcast media.

To find out more about what was discussed at PET's conference, subscribe for free to PET's flagship publication BioNews, which will be publishing a serious of comment pieces about the various conference sessions.