HDBR stands for is the Human Developmental Biology Resource. The HDBR is a tissue bank; this means that biological samples are collected and stored with the donor’s written permission so that they can be used by researchers who need the material for their studies. The HDBR banks human embryonic and fetal tissues and we have been collecting these tissues since 1999. During this time, tissue provided by the HDBR has helped support numerous important research projects in many different countries.
There are a number of reasons why research involving embryonic/fetal tissue is needed and why storing this type of tissue in a bank like the HDBR is useful, for example:
- Differences between humans and animals means that some research can only be done with human tissues. This includes research looking at the early stages of human development and some types of research looking at treatments for human disease. Also, when human disease-related studies have been carried out in animals, it is important to confirm these results directly in human.
- Collecting tissue in a bank (compared to lots of researchers trying to collect tissues for themselves) means that we can be sure that all women who donate receive the same information and that it is given by researchers who have experience in discussing this type of research. It also means that the tissues can be treated and stored in a consistent way and that researchers can get access to the types of tissues they need easily.
The HDBR supports research looking at how humans and their tissues and organs form. This includes studies looking at the reasons why some babies develop abnormalities before they are born and how this might be prevented in the future.
Tissue for the HDBR is donated voluntarily by women who have had a termination of pregnancy (abortion) from collaborating clinics in the UK. Information is provided so that women understand why they are being asked to donate and what will happen with the tissue collected. Any questions they may have are answered so that women have all the information they require to make a decision about whether they wish to donate or not. There are strict rules that the HDBR must abide by to ensure the option to donate to the HDBR is explained to women sensitively and in an understandable way to allow a fully informed choice to be made. For example, women:
- are only approached with information about donation after they have made the decision to have a termination, so that their decision to terminate is not influenced in any way by the option to donate
- are given full information about the HDBR
- have all of their questions answered
- are given as much time as they need to make a decision
- give written consent to donate before any tissue is collected
Women who donate do not get anything in return for their donation and receive the same hospital care as women who decide not to donate. Women donate anonymously, which means that the HDBR does not get any information that identifies the women.
The HDBR has supported lots of varied research projects all over the world since it was first set up in 1999. Below are just two recent examples:
Case Study 1 – Zika virus
Zika viral infections during pregnancy have given rise to a high level of children being born with microcephaly. This is a condition where the head is smaller in size than it should be and can have many serious consequences for the individual including severe mental disability.
U.K. based research using tissue provided by the HDBR has helped to understand more about how the virus affects the brain cells of the developing fetus. READ MORE HERE. A U.S. research group has shown how a drug can prevent the virus reproducing inside the brain cells and protect them against the effects of the virus. This work has opened up the drug’s potential to treat the Zika virus in the future. READ MORE HERE.
Case study 2 - Anterior segment dysgeneses (ASDs)
A group combining researchers from laboratories in the U.K. and U.S. completed work that identified a mutated gene (CPAMD8) present in some people with Anterior segment dysgeneses or ASDs. This disorder affects the front region of the eye causing visual impairment and can sometimes result in blindness. The CPAMD8 gene is not present in mice and so the use of human tissue was vital to understanding more about how this gene normally works. Further research has identified that this gene plays an important role in the way that the human eye develops in early pregnancy READ MORE HERE.
The HDBR is overseen by a group (a Steering Committee) led by an independent scientist specialising in developmental genetics/biology. Other members include two senior scientists nominated by the organisations that provide funding to HDBR, one or more ethicist, the HDBR directors and managers, and doctors working in the hospitals where donations are collected. The group also includes people who are there to represent the views of the general public (lay representatives).
The Steering Committee reviews all requests made by researchers to use tissues held in the bank. The committee makes a decision about these requests based on a number of factors including;
- the quality of the research (HDBR will only support research projects of the highest quality)
- the type of research (HDBR gives priority to some types of research, for example research that is likely to give important information about early human development and the way in which diseases develop)
- the way in which the research will be done (all research must be done ethically and to the standards required in the U.K.).
The National Research Ethics Service (NRES) has given HDBR approval to function as a Research Tissue Bank (full details of the HDBR’s ethics approval can be downloaded from www.hdbr.org/registration/ethics.html). The Human Tissue Authority also monitors how HDBR works to ensure it complies with the Human Tissue Act (HTA; 2004).