The Human Developmental Biology Resource, 2023-28

• Research type

  Research Tissue Bank

• IRAS ID

  326492

• Research summary

  The Human Developmental Biology Resource

• REC name

  London - Fulham Research Ethics Committee

• REC reference

  23/LO/0312

• Date of REC Opinion

  30 Jun 2023

• REC opinion

  Further Information Favourable Opinion

• Data collection arrangements

  Women who have already decided (and consented) to undergo termination of pregnancy are approached by a trained HDBR Research Co-ordinator to seek consent for donation of fetal tissue and placenta. Consent is also sought for provision of medical and social information, and for donation of saliva for DNA extraction. Donors are given a patient information sheet that outlines the types of research that may be carried out with the fetal tissue. They are informed that their medical care will not be affected by their decision to donate or not. They are told that their fetal tissue will be anonymised, so that results from the research cannot be linked back to the donor. After written consent for donation of fetal tissue has been obtained, donors are free to withdraw consent up to the time of tissue collection, after which tissue samples are anonymised and so withdrawal of consent is no longer possible. Fetal tissue samples are transported to the laboratory, carefully documented and stored in a tissue bank, with sample information entered on a secure database.

• Research programme

  Research projects are invited from qualified scientists who work in recognised research institutions in the UK and overseas. Non-UK investigators need to demonstrate that their human tissue research is conducted in an ethical environment equivalent to that operating in the UK. Project proposals are evaluated by the HDBR’s Joint Steering Committee which is chaired by an external scientific/medical expert and, once projects are formally approved, tissue samples are sent to the requesting scientist. A Material Transfer Agreement is signed between the HDBR and the receiving institution. Alternatively, HDBR staff may carry out commissioned research, if the requesting scientists lack the scientific facilities or expertise to carry out the laboratory work. The goal of the research is to gain new information on birth defects and other diseases of the fetus and young child (e.g. spina bifida, cleft palate). Moreover, stem cell research and pre-clinical studies of novel therapies are also supported by the HDBR. To date, HDBR samples have been used in research that has culminated in more than 400 original publications in the scientific literature. This research is an essential step towards developing new methods for diagnosing and treating childhood disease.

• Storage license

  12220

• RTBTitle

  The Human Developmental Biology Resource

• Establishment organisation

  UCL

• Establishment organisation address

  Great Ormond Street Institute of Child Health

  30 Guilford Street

  London

  WC1N 1EH