The Human Developmental Biology Resource
Research type
Research Tissue Bank
IRAS ID
134561
Contact name
A J Copp
Contact email
Research summary
The Human Developmental Biology Resource
REC name
London - Fulham Research Ethics Committee
REC reference
08/H0712/34+5
Date of REC Opinion
23 Jul 2013
REC opinion
Favourable Opinion
Data collection arrangements
The Human Developmental Biology Resource (HDBR) collects fetal tissue between 4 and 22 weeks of gestation from terminations of unwanted pregnancy. Women who have already decided (and consented) to undergo a termination of pregnancy are approached by a trained research technician to seek consent for donation of their fetal tissue and a sample of placenta. They are given an information sheet that provides an outline of the research that may be carried out on 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 (given a number with no link to the patient’s name or other details). Therefore, results from the research cannot be linked back to the donating woman. Written consent for donation of fetal tissue is then obtained. Women are free to withdraw consent up to the time of tissue collection. After this time, when tissue samples have been anonymised, it is not possible for the woman to withdraw consent.
Research programme
Fetal tissue samples are collected by members of the HDBR team, excluding the research technician who obtained consent. They are transported back to the laboratory and carefully documented using a microscope, with storage of information on a database. Research projects are invited from all qualified scientists in the UK and beyond. Proposed new projects are evaluated by the HDBR’s Joint Steering Committee, chaired by an external scientific/medical expert. If the project is considered to have scientific importance and feasibility, then it is formally approved and tissue samples are sent to the requesting scientist. Alternatively, the HDBR staff may carry out the research on behalf of requesting scientists. The goal of the research is to gain new information on the role of genes in causing diseases of the fetus and young child. Many birth defects or inherited diseases (e.g. spina bifida, cleft palate) arise when the fetus is developing in the uterus. The HDBR supports research of importance in discovering how genes act during fetal development and how diseases originate at this stage. This research is essential if we are to develop new methods for diagnosing and treating birth defects in future.
RTBTitle
The Human Developmental Biology Resource
Establishment organisation
UCL
Establishment organisation address
Institute of Child Health, UCL
30 Guilford Street
London
WC1N 1EH