Ethics of prenatal therapies and public engagement

Ethics of prenatal therapies

Overview: Ethical considerations are an important part of developing prenatal therapies and are embedded in all our research. We have investigated ethical issues in relation to prenatal gene and cell therapy for genetic and obstetric conditions with stakeholders and potential patients.

Maternal gene therapy:

We considered the ethics of placental gene therapy here.

A recent review suggests that there is no objection of ethical, legal or regulatory principles to the maternal gene therapy intervention under development in the EVERREST programme.

Fetal surgery:

We are reviewing the ethical, legal and regulatory principles relating to novel fetal surgery.

Collaborations: Professor Richard Ashcroft (Queen Mary University of London); Professor Jan Deprest (UCL); Dr Kevin Cao, Alice Booth

Funding: European Commission, Wellcome Trust, EPSRC

Public engagement

Engaging with Patients

Overview: Involving patients in designing research pathways helps to achieve successful outcomes and is an important aspect of our research. The group engages with the public and patients in the following ways:

  • Identifying patient priorities for research
  • Discussing ethical issues relating to developing prenatal therapy
  • Understanding issues of informed consent relating to trials of prenatal therapy
  • Collaborating with patients to develop new ways to image and treat the fetus in the womb

Team: Prenatal Imaging and Surgery

The Patient Public Advisory Group for GIFT-Surg was set up as part of a 7 year programme grant funded by a Wellcome Trust and EPSRC Innovative Engineering for Health Award.  The group has parents and representatives from a number of UK charities (SHINE; CDH-UK; BLISS; TAMBA; ARC) who are providing continuous input to the project during the development of innovations.

Team: Fetal Growth Restriction

As part of the 6 year EVERREST programme, we consulted with patients who had experienced a pregnancy with severe early onset fetal growth restriction to understand their views about developing a treatment. The overall conclusion drawn from these interviews was that they had a generally favourable view of the ethical and social acceptability of a maternal gene therapy to treat this condition.

Links:

GIFT-Surg project: www.gift-surg.ac.uk

ARC – Antenatal Results and Choices: www.arc-uk.org

Bliss – for babies born to too soon, too small, too sick: www.bliss.org.uk

CDH UK – the Congenital Diaphragmatic Hernia Support Charity: www.cdhuk.org.uk

Shine – Spina bifida and Hydrocephalus information, networking and equality: www.shinecharity.org.uk

Twins Trust – https://twinstrust.org/