Choices and boundaries (PGD)
Background information
Pre-implantation Genetic Diagnosis (PGD) enables people to avoid passing on specific inherited conditions to their children. This technique involves checking the genes of embryos created through IVF for these specific genetic conditions.
The majority of conditions which have previously been licensed for PGD have been for serious conditions that would be usually present in the child at birth.
A further potential use for PGD involves carrying out PGD to avoid passing on susceptibility to later onset cancer conditions such as inherited breast cancer.
These conditions are different from the previous conditions which the HFEA licensed because they are later onset, lower penetrance and potentially treatable.
Consultation process
Between 2005 and 2006 the HFEA carried out a consultation regarding whether PGD should be used to avoid passing on a faulty gene that causes a susceptibility to a type of cancer.
The consultation document “Choices and Boundaries" gathered the views of the public, patients, the medical profession and other interested parties on the use of PGD for a group of inherited cancer conditions, which included:
- inherited breast cancer
- inherited ovarian cancer
- a type of inherited bowel cancer - Hereditary Non-Polyposis Colon Cancer (HNPCC).
Following analysis of a wide range of views gathered from a public meeting the HFEA's Ethics and Law Committee produced the “Choices and Boundaries" report and a written consultation document.
Consultation outcome
During the meeting of The Authority in May 2006 the committee considered the findings of the “Choices and Boundaries" report and agreed in principle it would be appropriate for PGD to be available for serious, lower penetrance, later-onset genetic conditions such as inherited breast, bowel and ovarian cancer.
It was further agreed that a HFEA Licence Committee would initially (for two years) consider applications for later onset and lower penetrance conditions on a case-by-case basis.
Read the Authority decision
Further information
The HFEA is currently carrying out an evaluation of the licensing of later onset and lower penetrance conditions and an evaluation of the licensing of HLA tissue typing applications.
As part of the evaluation the HFEA will gather evidence on how the “Choices and Boundaries” policy has operated in licensing decisions made since 2006 and the impact of this policy on clinicians and patients.
- Choices and boundaries (269Kb)
- Choices and boundaries - public discussion summary (179Kb)
- The Authority decision (34Kb)
Page last updated: 12 April 2009
