20. Donor assisted conception

Version 4.0

Refer to principles 2, 4, 5 and 6

Regulatory principles that apply to licensed centres

  • 2.

    have proper respect for the privacy, confidentiality, dignity, comfort and well being of patients and donors;

  • 4.

    take proper account of the welfare of any child who may be born as a result of the licensed treatment provided by them and any other child who may be affected by that birth;

  • 5.

    provide prospective and current patients and donors with sufficient, accessible and up-to-date information in order to allow them to make informed decisions;

  • 6.

    ensure that patients and donors have provided all relevant consents, before any licensed activity is undertaken;

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Human Fertilisation and Embryology (HFE) Act 1990 (as amended)

Conditions of licences for treatment

  • 13

    (6C) In the case of treatment services falling within paragraph 1 of Schedule 3ZA (use of gametes of a person not receiving those services) or paragraph 3 of that Schedule (use of embryo taken from a woman not receiving those services), the information provided by virtue of subsection (6) or (6A) must include such information as is proper about -

    (a) the importance of informing any resulting child at an early age that the child results from the gametes of a person who is not a parent of the child, and

    (b) suitable methods of informing such a child of that fact.

  • 13

    (13) The person responsible shall comply with any requirement imposed on that person by section 31ZD.

  • 31ZA

    Request for information as to genetic parentage etc.

  • (1)

    A person who has attained the age of 16 ("the applicant") may by notice to the Authority require the Authority to comply with a request under subsection (2).

  • (2)

    The applicant may request the Authority to give the applicant notice stating whether or not the information contained in the register shows that a person (“the donor”) other than a parent of the applicant would or might, but for the relevant statutory provisions, be the parent of the applicant, and if it does show that -

    (a) giving the applicant so much of that information as relates to the donor as the Authority is required by regulations to give (but no other information), or

    (b) stating whether or not that information shows that there are other persons of whom the donor is not the parent but would or might, but for the relevant statutory provisions, be the parent and if so -

    (i) the number of those other persons,
    (ii) the sex of each of them, and
    (iii) the year of birth of each of them.

  • 31ZB

    Request for information as to intended spouse etc.

  • (1)

    Subject to subsection (4), a person (“the applicant”) may by notice to the Authority require the Authority to comply with a request under subsection (2).

  • (2)

    The applicant may request the Authority to give the applicant notice stating whether or not information contained in the register shows that, but for the relevant statutory provisions, the applicant would or might be related to a person specified in the request (“the specified person”) as -

    (a) a person whom the applicant proposes to marry,

    (b) a person with whom the applicant proposes to enter into a civil partnership, or

    (c) a person with whom the applicant is in an intimate physical relationship or with whom the applicant proposes to enter into an intimate physical relationship.

  • (3)

    Subject to subsection (5), the Authority shall comply with a request under subsection (2) if -

    (a) the information contained in the register shows that the applicant is a relevant individual,

    (b) the Authority receives notice in writing from the specified person consenting to the request being made and that notice has not been withdrawn, and

    (c) the applicant and the specified person have each been given a suitable opportunity to receive proper counselling about the implications of compliance with the request.

  • (4)

    A request may not be made under subsection (2)(c) by a person who has not attained the age of 16.

  • (5)

    Where a request is made under subsection (2)(c) and the specified person has not attained the age of 16 when the applicant gives notice to the Authority under subsection (1), the Authority must not comply with the request.

  • 31ZD

    Provision to donor of information about resulting children

  • (3)

    The donor may by notice request the appropriate person to give the donor notice stating -

    (a) the number of persons of whom the donor is not a parent but would or might, but for the relevant statutory provisions, be a parent by virtue of the use of the gametes or embryos to which the consent relates,

    (b) the sex of each of those persons, and

    (c) the year of birth of each of those persons.

  • (4)

    Subject to subsections (5) and (7), the appropriate person shall notify the donor whether the appropriate person holds the information mentioned in subsection (3) and, if the appropriate person does so, shall comply with the request.

  • (5)

    The appropriate person need not comply with a request under subsection (3) if the appropriate person considers that special circumstances exist which increase the likelihood that compliance with the request would enable the donor to identify the persons falling within paragraphs (a) to (c) of subsection (3).

  • 31ZE

    Provision of information about donor-conceived genetic siblings

  • (1)

    For the purposes of this section two relevant individuals are donor-conceived genetic siblings of each other if a person (“the donor”) who is not the parent of either of them would or might, but for the relevant statutory provisions, be the parent of both of them.

  • (2)

    Where -

    (a) the information on the register shows that a relevant individual (“A”) is the donor-conceived genetic sibling of another relevant individual (“B”),

    (b) A has provided information to the Authority (“the agreed information”) which consists of or includes information which enables A to be identified with the request that it should be disclosed to –

    (i) any donor-conceived genetic sibling of A, or

    (ii) such siblings of A of a specified description which includes B, and

    (c) the conditions in subsection (3) are satisfied, then, subject to subsection (4), the Authority shall disclose the agreed information to B.

  • (3)

    The conditions referred to in subsection (2)(c) are –

    (a) that each of A and B has attained the age of 18,

    (b) that B had requested the disclosure to B of information about any donor-conceived genetic sibling of B, and

    (c) that each of A and B has been given a suitable opportunity to receive proper counselling about the implications of disclosure under subsection (2).

  • (4)

    The Authority need not disclose any information under subsection (2) if it considers that the disclosure of information will lead to A or B identifying the donor unless -

    (a) the donor has consented to the donor’s identity being disclosed to A or B, or

    (b) were A or B to make a request under section 31ZA(2)(a), the Authority would be required by regulations under that provision to give A or B information which would identify the donor.

The Human Fertilisation and Embryology Authority (Disclosure of Information) Regulations 2004

Information that the Authority is required to give

  • 2

    (1) Subject to paragraph (4), the information contained in the register which the Authority is required to give an applicant by virtue of section 31(4)(a) of the Act is any information to which paragraph (2) or (3) applies.

    (2) This paragraph applies to information as to -

    (a) the sex, height, weight, ethnic group, eye colour, hair colour, skin colour, year of birth, country of birth and marital status of the donor;

    (b) whether the donor was adopted;

    (c) the ethnic group or groups of the donor's parents;

    (d) the screening tests carried out on the donor and information on his personal and family medical history;

    (e) where the donor has a child, the sex of that child and where the donor has children, the number of those children and the sex of each of them;

    (f) the donor's religion, occupation, interests and skills and why the donor provided sperm, eggs or embryos;

    (g) matters contained in any description of himself as a person which the donor has provided;

    (h) any additional matter which the donor has provided with the intention that it be made available to an applicant;

    but does not include information which may identify the donor by itself or in combination with any other information which is in, or is likely to come into, the possession of the applicant.

    (3) This paragraph applies to information from which the donor may be identified which he provides after 31st March 2005 to a person to whom a licence applies, being information as to -

    (a) any matter specified in sub-paragraphs (a) to (h) of paragraph (2);

    (b) the surname and each forename of the donor and, if different, the surname and each forename of the donor used for the registration of his birth;

    (c) the date of birth of the donor and the town or district in which he was born;

    (d) the appearance of the donor;

    (e) the last known postal address of the donor.

    (4) The information which the Authority is required to give to the applicant does not include any information which at the time of his request the applicant indicates that he does not wish to receive.

Licence conditions

  • T54
    Gametes from non-identifiable donors must not be used in licensed treatment except in the following
    circumstances:

    a. The gametes were supplied to the centre before 1 April 2005; and

    b. The woman having treatment (or the person that she is having treatment with) has a child
    that was conceived from the gametes before 1 April 2006; and

    c. The gametes are to be used to create a genetically related sibling for that child

    Embryos from non-identifiable donors must not be used in licensed treatment except in the
    following circumstances:

    a. The embryos were created before 1 April 2005; and

    b. The woman having treatment (or the person that she is having treatment with) has a child
    that was conceived from the embryos before 1 April 2006; and

    c. The embryo is to be used to create a genetically related sibling for that child

    Embryos which were created before 1 April 2006, and which were created using the gametes of the
    woman to be treated (or the person that she is being treated with) and the gametes of a non-identifiable
    donor, may continue to be used in treatment (regardless of whether or not there are any existing
    genetically related siblings).

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Information for people seeking treatment with donated gametes and embryos

  • 20.1

    The centre should give people seeking treatment with donated gametes or embryos:

    a)  non-identifying information about donors whose gametes are available to them, including the goodwill message and the pen-portrait (if available),

    b) information about genetic inheritance and, in particular, the likelihood of inheriting physical characteristics from the donor, and

    c) information about the age of the donor and the associated risk of miscarriage and chromosomal abnormalities.

  • 20.2

    The centre should provide information to people seeking treatment with donated gametes or embryos about legal parenthood, and the collection and provision of information, specifically:

    a) who will be the child’s legal parent(s) under the HFE Act 2008 and other relevant legislation (nationals or residents of other countries, or anyone treated with gametes obtained from nationals or residents of other countries, should be informed that the law in other countries may be different from that in the UK)

    b) information that centres must collect and register with the HFEA about the donors

    c) what information may be disclosed to people born as a result of donation and in what circumstances, and

    d) a donor-conceived person’s right to access:

    i) anonymous information about the donor and any donor-conceived genetic siblings, from the age of 16

    ii) identifying information about the donor (where applicable), from the age of 18

    iii) identifying information about donor-conceived genetic siblings, with mutual consent, from the age of 18

    iv) information about the possibility of being related to the person they intend to marry or enter into a civil partnership with, at any age, and

    v) information about the possibility of being related to the person they intend to enter into an intimate physical relationship with, from the age of 16.

  • 20.3

    The centre should give people seeking treatment with donated gametes or embryos information about genetic and other screening of people providing gametes. This information should include details about:

    a) the sensitivity and suitability of the tests, and

    b) the possibility that a screened provider of gametes may be a carrier of a genetic disease or infection.

  • 20.4

    The centre should provide information that explains the limitations of testing procedures and the risks of treatment to anyone seeking treatment with donated gametes or embryos. The centre should make available appropriate counselling.

  • 20.5

    If a woman is to receive donor insemination treatment, then, before treatment commences, the centre should discuss with her the number of treatment cycles to be attempted if she does not conceive initially. The centre and the woman should together review this situation regularly.

  • 20.6

    Women should not be treated with gametes, or with embryos derived from gametes, of more than one man or more than one woman during any treatment cycle.

The importance of informing children of their donor origins

20AInterpretation of mandatory requirements

The centre must give patients seeking treatment with donor gametes and embryos information about the importance of telling any resultant children, at an early age, of their donor-conceived origins.  The centre must also give patients information on suitable methods of informing children of their donor-conceived origins.

  • 20.7

    The centre should tell people who seek treatment with donated gametes or embryos that it is best for any resulting child to be told about their origin early in childhood.  There is evidence that finding out suddenly, later in life, about donor origins can be emotionally damaging to children and to family relations.

  • 20.8

    The centre should encourage and prepare patients to be open with their children from an early age about how they were conceived. The centre should give patients information about how counselling may allow them to explore the implications of treatment, in particular how information may be shared with any resultant children.

Implications of donor conception and the provision of counselling

  • 20.9

    If it is possible that the question of treatment with donated gametes or embryos may arise, the centre should raise this with the person or couple seeking treatment before their treatment starts. The centre should allow people enough time to consider the implications of using donated gametes or embryos, and to receive counselling before giving consent.

Access to information for donors, donor-conceived people and parents

20BInterpretation of mandatory requirements

A donor may request information from a centre as to the number, sex, and birth year of any children born by means of their gametes or embryos.  If the centre holds that information, it must provide it, unless the person responsible considers that special circumstances increase the likelihood of the donor being able to identify any of those children.

  • 20.10

    The centre should inform people seeking treatment with donated gametes or embryos that the donor will be able to request the following information about any children born as a result of their donated gametes or embryos:

    a) the number of children born

    b) their sex, and

    c) their year of birth.

  • 20.11

    The centre should inform people seeking treatment with donated gametes or embryos that any resulting children will have access to the following non-identifying information about the donor (if the donor has provided it) from the age of 16:

    a) physical description (height, weight, and eye, hair and skin colours)

    b) year and country of birth

    c) ethnic group

    d) whether the donor had any genetic children when they registered, and the number and sex of those children

    e) other details the donor may have chosen to supply (eg, occupation, religion and interests)

    f) the ethnic group(s) of the donor’s parents

    g) whether the donor was adopted or donor conceived (if they are aware of this)

    h) marital status (at the time of donation)

    i) details of any screening tests and medical history

    j) skills

    k) reason for donating

    l) a goodwill message, and

    m) a description of themselves as a person (pen portrait)

  • 20.12

    The centre should inform people seeking treatment with gametes or embryos donated after 31 March 2005, or with those donated before this date by a donor who subsequently re-registered as identifiable, that any children born as a result of the donation will have access to the following identifying information about the donor, from the age of 18:

    a) full names (and any previous names)

    b) date of birth, and town or district where born, and

    c) last known postal address (or address at time of registration).

  • 20.13

    The centre should inform people seeking treatment with donated gametes or embryos that, once they give birth to a child as a result of that donation, they will be entitled to access:

    a) all non-identifying information about the donor.

    b) information about the number, sex and year of birth of their children’s genetically related donor-conceived siblings.

    It is recommended that this information is shared with the child born as a result of donation. If the centre is unable to provide this information, it should direct parents to the HFEA.

  • 20.14

    Centres should inform parents seeking information about their child’s donor or genetically related donor-conceived siblings that they may find counselling, or similar support services, on the implications of receiving such information helpful.

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Code of Practice edition: 8