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The PAGE project

The PAGE project aims to carry out research to improve genetics-derived prognoses for pregnancies with a structurally abnormal fetus. It is a collaboration between: The Sanger Institute; Great Ormond Street Hospital; University of Cambridge; Birmingham Women’s Hospital; Antenatal Results and Choices; and the Ethox Centre at the University of Oxford. The three primary objectives of the PAGE project are to:

  1. Elucidate the relative contribution of different forms of genetic variation to prenatal structural anomalies
  2. Design cost-effective genome sequencing assays for improved prenatal diagnosis of structural anomalies
  3. Catalyse the adoption by the NHS of prenatal diagnostic sequencing through translation of acquired know-how, rigorous health economic assessment and establishment of an ethical and social science framework for clinical implementation

The participants in the study will be women (and their partners) undergoing invasive testing because of structural anomalies identified by ultrasound any time in pregnancy after 11 weeks gestation.

The PAGE ethics programme

The development of genomic approaches to prenatal testing being developed by the PAGE project offers the potential for a better understanding of prenatal structural anomalies in the fetus and ultimately for improved patient care and more informed reproductive decision making. In addition to the scientific and clinical challenges of achieving this, the introduction of new reproductive technologies also presents a number of ethical problems. The successful and appropriate development and introduction into clinical practice of technologies such as prenatal genomics requires these problems to be identified, understood and carefully analysed in the development of models of good ethical practice. In recognition of the importance of considering ethical issues at an early stage, the PAGE project has established an ethics programme to be carried out by Professor Michael Parker and Dr Ruth Horn of the Ethox Centre at the University of Oxford. Working closely with the PAGE scientific team, and the social science research group at Birmingham University, the PAGE ethics programme will provide ethics support and advice to the PAGE partners and will carry out a programme of ethics research likely to include the following:

  • a critical review of the existing literature and relevant professional guidelines followed by the publication of a discussion paper;
  • a national expert working party bringing together relevant stakeholders including patient groups. fetal medicine centres, cytogenetic teams (DNA preparation and validation laboratories), clinical geneticists, the teams within the Sanger Institute, and other relevant health professionals to map out the key practical issues likely to arise and important relevant (potentially conflicting) principles;
  • drawing on the literature review, working party and experience of providing ethics support to PAGE, conduct a case-based ethical analysis of the issues to inform the development, with relevant stakeholders, of draft principles of good practice including the identification of problematic areas of practice where tensions are likely to arise between important professional and ethical commitments;
  • a national ‘consensus conference’ bringing together some of the same key stakeholders who attended the working party together with policy-makers to discuss and agree a shared position on key principles of good practice for the effective and appropriate translation of genomic approaches to prenatal screening into the NHS
  • Michael Parker
    Michael Parker

    Director of the Wellcome Centre for Ethics and Humanities, and the Ethox Centre

  • Ruth Horn
    Ruth Horn

    Associate Professor in Ethics