RNID: For deaf and hard of hearing people.

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Q1. What is IVF?
Q2. Why would I have IVF?
Q3. What is PGD?
Q4. Do I have to have genetic testing if I am having IVF?
Q5. Is PGD available for deafness
Q6. Why would I have my embryos screened?  
Q7. Could I be forced to be genetically screened?
Q8. Can deafness genes be removed?

About the Human Fertilisation and Embryology Bill

Q9. What does clause 14 (4) (9) say?
Q10. What does this mean for me as a deaf person?
Q11. I want to have a deaf baby, can I have one?
Q12. How will this affect couples having IVF?
Q13. Will the bill lead to the eradication of "genes that cause deafness"?
Q14. Can a deaf couple have PGD for other conditions not related to deafness?

Q1. What is IVF?

BSL clip: What is IVF? (3MB)

IVF is an acronym for in vitro fertilisation (fertilisation in a test tube) and refers to a process whereby someone who is having infertility problems is helped to have a baby.  IVF involves adding the man’s sperm to the woman’s egg in the laboratory to produce a fertilised embryo. In the very early stages these embryos are really only a bunch of cells.  The cells are checked to see which are dividing correctly and growing well as these will turn into embryos that could eventually grow into a baby.  At approximately three to five days after conception, two embryos that look the most likely to develop will be put back inside the woman’s womb.  Hopefully one of these will implant and a baby will begin to grow.

Q2. Why would I have IVF?

BSL clip: Why would I have IVF? (2.7MB)

A couple would have IVF if there was a problem that meant that they could not conceive a baby naturally. Reasons a couple may not conceive naturally include:

  • tubal blockage or failed tubal reversal (vasectomy), 
  • endometriosis (where the tissue that lines the uterus grows outside a woman’s uterus), 
  • pelvic adhesion (scar tissue often caused by scaring from abdominal surgery including caesarean section or pelvic inflammatory disease),
  • unexplained male or female infertility

Other reasons you may choose to use IVF include:

  • genetic testing (PGD) for inherited diseases,
  • genetic testing (PGD) for possible reasons for multiple miscarriage.

Q3. What is PGD?

BSL clip: What is PGD? (4.4 MB)

PGD stands for Preimplantation Genetic Diagnosis. It is a method of identifying genetic disorders before implantation of the embryo. The procedure is conducted after the egg has been fertilised (using IVF). The fertilised embryo divides forming two cells and then each of those split again to form four cells. By three days of development the embryo should be around eight cells. At this stage one of the cells is removed, without damaging the embryo which will continue to grow. The genetic information in this cell will be identical to that in the other cells left in the embryo. This information will be examined by a genetic scientist for a single condition, e.g. muscular dystrophy, and then the embryo(s) that don’t contain the gene for the disease that is being screened for are implanted. Once implantation has occurred it is hoped that a pregnancy will develop. The success rate of having a baby at the end of PGD is less than 50%.

Q4. Do I have to have genetic testing if I'm having IVF?

BSL clip: Do I have to have genetic testing if I'm having IVF? (4.4MB)

PGD will not be offered to you if you are having IVF unless you specifically ask for it.  It is also only possible to have PGD at specialised IVF units and the vast majority of units in the UK do not routinely do PGD.

PGD is currently available to test for serious, life-threatening conditions and is accepted as a lifeline to many families who, for example, have had numerous children die from serious genetic conditions. PGD offers them the chance to have a healthy child without the family genetic condition.  PGD has recently become available for deafness.  Most deaf children are born to hearing parents and a very small number of these parents, who may already have several deaf children, may be interested in using PGD to help them have a hearing child.

Q5. Is PGD available for deafness

BSL clip: Is PGD available for deafness? (2.22MB)

There are many genes that can cause deafness. If the gene responsible for your family’s deafness has been identified, then PGD may be available to help you have a hearing child. There is discussion at the moment about whether parents should be able to choose the embryos with the genes for deafness.

Q6. Why would I have my embryos screened?

BSL clip: Why would I have my embryos screened? (2.86MB)

If you have a history of deafness in your family or are deaf yourself you can go for genetic counselling (read the NDCS leaflet on genetic counselling or our genetics and deafness factsheet for more information). You and your partner can be tested to find out if you have a gene for deafness. If a deafness gene is identified, the genetics professionals can advise you if testing your embryos is technically possible.

Q7. Could I be forced to be genetically screened?

BSL clip: Could I be forced to be genetically screened? (1.98MB)

No one is forced to have genetic screening or testing, it’s only available to those who request it. People may choose to have their embryos screened because they already have deaf children and they want to try to ensure that their next child will be hearing. 

Q8. Can deafness genes be removed?

BSL clip: Can deafness genes be removed? (0.9MB)

No. It is not possible to remove a deafness gene.

About the Human Fertilisation and Embryology Bill

Q9. What does clause 14 (4) (9) say?

BSL clip: What does clause 14 (4) (9) say? (3.4MB)

Persons or embryos that are known to have a gene, chromosome or mitochondrion abnormality involving a significant risk that a person with the abnormality will have or develop—
(a) a serious physical or mental disability,
(b) a serious illness, or
(c) any other serious medical condition,
must not be preferred to those that are not known to have such an
abnormality.

Q10. What does this mean for me as a deaf person?

BSL clip: What does this mean for me as a deaf person? (3.1MB)

Until the explanatory notes to the Bill were read, no one thought this clause applied to deafness as it does not obviously fit into any of the above categories (for example, 'serious illness').  However, this clause has been added to prevent the deliberate use of PGD for deafness to select for deaf embryos.  This means that the government wish to make it illegal for parents to have PGD and then select to keep the embryos with the genes for deafness.  This has caused controversy within the deaf community. Some feel that it is right that parents should not pass on deafness to their children, others feel that parents should have the right to use genetic technology the same as hearing people, and if they so choose, should be able to pick embryos that would result in a deaf child.

Q11. I want to have a deaf baby, can I have one?

BSL clip: I want to have a deaf baby, can I have one? (3.5MB)

Many deaf parents, particularly those who have a strong Deaf identity may prefer to have deaf children so that they can pass on their language, culture and identity to their children.  Others prefer to have hearing children. There are opposing views on this.  Deaf parents who have children, naturally or using IVF without PGD, will be able to have deaf children where their genetic makeup makes this likely. If parents want to choose to use genetic technology to enable them to have deaf children (for example by using PGD) then it is unlikely that this will be possible if the above Bill is passed into law.

Q12. How will this affect couples having IVF?

BSL clip: How will this affect couples having IVF? (2.00MB)

The above Bill won’t affect couples having IVF directly. It only becomes relevant to them if they want to use PGD for deafness and specifically request this. If a couple need to have donated sperm or eggs for use in IVF, it should be possible for them to receive this from a deaf relative. This latter issue is still slightly ambiguous in the wording of the Bill and is likely to be clarified in the near future.

Q13. Will the bill lead to the eradication of "genes that cause deafness"?

BSL clip: Will the bill lead to the eradication of "genes that cause deafness"? (1.74MB)

No. The Bill states that parents who have PGD specifically for deafness must choose only to keep the embryos which are likely to develop with normal levels of hearing.  However, couples who do not chose PGD are not affected in any way by the Bill.

Q14. Can a deaf couple have PGD for other conditions not related to deafness?

BSL clip: Can a deaf couple have PGD for other conditions not related to deafness? (990KB)

Yes.

For more information read our factsheet on genetics and deafness or the NDCS leaflet on genetic counselling.