IVF treatment & its associated processes are closely monitored and regulated to ensure your rights and the rights of any future children are adequately protected. The following information covers consents required for a number of areas within the field.
All information regarding your treatment is strictly confidential and subject to both the HFEAct and the Data Protection Act. We may communicate with your general practitioner, referring consultant and other carers only with your written consent. However you should be aware that medical practitioners by virtue of their knowledge and experience may already know or understand the nature of treatment that might be undertaken in your specific circumstance.
Once we have disclosed the information to the unlicensed individuals it can no longer be controlled by the HFEAct but it will still be regulated by the Data Protection Act and General Law of Confidentiality. In general practice, information will be accessible to other GPs and staff working within the practice even if your consent specifically named only one of the several GPs in your practice. When changing GPs, your medical records will be transferred to your new GP practice without our involvement or written named consent from you.
From time to time your notes may be inspected for audit by HFEA members, Health Care Commission, Patient Safety Agency (PSA) and National Care Standards Commission.
You have a right to decline consent for communication but we need to consider your reasons for declining consent in our assessments.
We generally advise to keep your G.P. informed as they are your primary carers, will also be committed to confidentiality and can help you in an emergency but only if they are fully informed.
Sometimes patients request their GP to keep written information regarding assisted conception separate from the practice notes so that this information is not freely available to all the staff in their surgery. You may discuss this option when required with your GP.
Freezing of Eggs, Sperm and Embryos
Please note that you have to decide the fate of your spare gametes and /or embryos and that we act as per your written consents.
Regarding Surplus Sperm: This issue becomes relevant where patients cannot give gametes when required e.g. in case of men requiring electro-ejaculation or surgical sperm retrieval. You may choose to freeze the spare sperm for your future use or discard them.
Embryo freezing: At the time of embryo transfer, we will discuss the fertilisation, growth rate and grade of embryos which is based on the embryo’s appearance. We will offer embryo freezing when deemed appropriate. Approximately 60% of embryos judged suitable for freezing survive and embryos with lower grades would have an even lower chance of survival. Before undertaking a frozen embryo transfer cycle, we try to ensure (as much as is possible) that upon thaw you would have at least some embryos suitable for transfer.
Embryo freezing can only be performed with your prior written consent. The legal storage limit for embryos is a maximum of 5 years from the date of freezing and this can be extended to 10 years if in the interim the female partner has reached the peri-menopausal years.
The embryos are your property and responsibility. You also have to decide the fate of the embryos in the event of death or mental incapacitation. They deserve similar considerations as those for your unborn future child. Therefore we strongly advise you to always remain in touch with us, to advise us of your change in address, intentions and suggest that you consider replacement of your frozen embryos at the earliest possible opportunity.
Prolonged culture: With your written consent, embryos can be maintained in culture until they stop growing or develop into the blastocyst (usually on day 5 or 6 after egg collection). Embryos generally will stop growth within this stage. The day 3, 4 or 5 embryos generally have a higher developmental potential. We cannot keep embryos in culture for observation alone unless there is a clear instruction from you to preserve them when appropriate.
Embryo donation: You can consider donating your embryos to help another couple. This is very similar to egg and sperm donation, you would be required to have implication counselling and the necessary screening tests. We will advise you to consider this option for your frozen embryos after you have completed your family or decided to discontinue all future treatment for yourself.
Embryo research: Please see the relevant section below for details.
Humanely discard the spare embryos: Only good quality embryos can be successfully frozen, donated to another couple or used for research. If you do not wish prolonged culture with a view to freezing then you must instruct us to humanely discard your spare embryos.
Please see IVF consent forms for further details. We emphasise that these choices are entirely personal.
Long term storage
Long tern storage is primarily for the storage of gametes and/or embryos prior to chemo or radiotherapy for cancer. We will be pleased to provide specific information on the length of storage permitted legally in your case. This can be quite a long storage period and up to your 55th birthday or for a total of 55 years. However this does not mean that the trust will be able to keep the sperm for this length of time. The duration of storage is agreed with yourself after discussion with your specialist, bearing in minds your reproductive intentions, how your fertility will be affected by chemo or radio therapy and your prognosis.
Posthumous use of gametes and embryos
Men can opt to permit their female partner to use their sperm or embryos created with them posthumously. There are ethical and legal concerns that you must consider very carefully before making a choice. We like you to have a discussion with the counsellor when considering implications of posthumous use of gametes to your future child.
Ethical issues: In your considerations the ‘Rights and Welfare of your Future Child/Children’ must be paramount. These considerations must also precede and exceed your own wishes. The law clearly states that the child has a ‘right to have a father or a father figure for paternal nurturing’. It is our statutory obligation to ensure that this right is upheld. For instance, the law asks us to identify and counsel individuals who will have ‘parental responsibility’ and who will be ‘responsible for the paternal nurturing of your child’.
Legal issues: The HFEAct provides that where a man’s sperm or embryos created with his sperm are used after his death, that he is not to be treated as the father of the child, except for the purpose of recording on the Register of Births as the Deceased father subject to the Human Fertilisation (Deceased Fathers) Act 2003 being fulfilled and for no other purpose. For instance, the child will have no entitlements to the man’s estate and if desired separate provisions will have to be made by the individuals concerned. The posthumous use of gametes or embryos is only possible if the sperm / embryos have been stored in the man’s lifetime and with his written consent. The unit has a statutory duty to consider the Welfare of Future Children born posthumously and to assess what arrangements have been put in place to meet the future child’s needs when treatment is requested.
This is a HFEA licensed and very carefully regulated activity. All centres have to obtain specific research licenses for the projects that they may conduct or be a participant. This section intends to make you broadly aware of the issues that surround egg / sperm / embryo research and does not in any way constitute a request from us for you to participate.
In suitable circumstances (usually when considering the future of the frozen tissues / eggs / sperm / embryos in our centre) you may be asked, among others, an option to consider donation to research. We will be pleased to provide the necessary detail regarding the ethically approved project if we can accept your donation. If there are no active research projects, we may be unable to accept the donation when the stored eggs/ sperm / embryos may have to be allowed to perish when the storage period expires.
All research is experimental and gametes or embryos used or created during the project cannot be transferred for treatment and after completion of the research they must be allowed to perish.
You are not obliged to take any decision and your decision to participate or not in any research project will not affect your treatment. If you intend to withdraw for any reason during a research trial, you are free to do so at any time as long as the project has not already been conducted.
During research projects, cells of the embryo or the gametes may be fixed in what is called ‘secondary research’ that may have genetic applications.
For confidentiality, the gametes and embryos are anonymised. Currently all anonymisation is irreversible i.e. no specific feedback regarding your eggs / sperm / embryos is possible.
You will be offered implication counselling if, in a genetic research proposal, the anonymisation was reversible. In this case you may be able to get feedback after the research in case we have findings that may be relevant to you.
If the unit took part in Stem Cell research, you will receive more specific information about that project. In that case you will need to be aware that any stem cell lines created may continue indefinitely and that these lines may be later used in other relevant research projects.
All of your eggs, sperm and embryos will be first and foremost used in your treatment or stored for future use.
In all treatment cycles, there are some unfertilised eggs, supernumerary sperm or embryos. Embryos that are not growing at the desired rate or have abnormalities in the appearance of their cells are not suitable for freezing as they are very unlikely to implant and become babies and if frozen they are also very unlikely to survive the freezing and thawing process. These cells are normally allowed to perish.
We request that you permit use of these cells for training in the laboratory. Training of new and young scientists and learning / incorporating new skills for an improvement in our success rates form an essential part of our service. Once these cells (eggs, sperm and embryos) have been used for training, they are always humanely discarded.