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Human Fertilisation and Embryology Bill [HL]


Human Fertilisation and Embryology Bill [HL]
Part 1 — Amendments of the Human Fertilisation and Embryology Act 1990

22

 

31ZC    

Power of Authority to inform donor of request for information

(1)   

Where—

(a)   

the Authority has received from a person (“the applicant”) a

notice containing a request under subsection (2)(a) of section

31ZA, and

5

(b)   

compliance by the Authority with its duty under that section

has involved or will involve giving the applicant information

relating to a person other than the parent of the applicant who

would or might, but for the relevant statutory provisions, be a

parent of the applicant (“the donor”),

10

   

the Authority may notify the donor that a request under section

31ZA(2)(a) has been made, but may not disclose the identity of the

applicant or any information relating to the applicant.

(2)   

In this section “the relevant statutory provisions” has the same meaning

as in section 31ZA.

15

31ZD    

Provision to donor of information about resulting children

(1)   

This section applies where a person (“the donor”) has consented under

Schedule 3 (whether before or after the coming into force of this section)

to—

(a)   

the use of the donor’s gametes, or an embryo the creation of

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which was brought about using the donor’s gametes, for the

purposes of treatment services provided under a licence, or

(b)   

the use of the donor’s gametes for the purposes of non-medical

fertility services provided under a licence.

(2)   

In subsection (1)—

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(a)   

“treatment services” do not include treatment services provided

to the donor, or to the donor and another person together, and

(b)   

“non-medical fertility services” do not include any services

involving partner-donated sperm.

(3)   

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

30

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,

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(b)   

the sex of each of those persons, and

(c)   

the year of birth of each of those persons.

(4)   

Subject to subsections (5) to (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,

40

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 any of the persons

45

falling within any of paragraphs (a) to (c) of subsection (3).

 
 

Human Fertilisation and Embryology Bill [HL]
Part 1 — Amendments of the Human Fertilisation and Embryology Act 1990

23

 

(6)   

In the case of a donor who consented as described in subsection (1)(a),

the Authority need not comply with a request made to it under

subsection (3) where the person who held the licence referred to in

subsection (1)(a) continues to hold a licence under paragraph 1 of

Schedule 2, unless the donor has previously made a request under

5

subsection (3) to the person responsible and the person responsible—

(a)   

has notified the donor that the information concerned is not

held, or

(b)   

has failed to comply with the request within a reasonable

period.

10

(7)   

In the case of a donor who consented as described in subsection (1)(b),

the Authority need not comply with a request made to it under

subsection (3) where the person who held the licence referred to in

subsection (1)(b) continues to hold a licence under paragraph 1A of

Schedule 2, unless the donor has previously made a request under

15

subsection (3) to the person responsible and the person responsible—

(a)   

has notified the donor that the information concerned is not

held, or

(b)   

has failed to comply with the request within a reasonable

period.

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(8)   

In this section “the appropriate person” means—

(a)   

in the case of a donor who consented as described in paragraph

(a) of subsection (1)—

(i)   

where the person who held the licence referred to in that

paragraph continues to hold a licence under paragraph

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1 of Schedule 2, the person responsible, or

(ii)   

the Authority, and

(b)   

in the case of a donor who consented as described in paragraph

(b) of subsection (1)—

(i)   

where the person who held the licence referred to in that

30

paragraph continues to hold a licence under paragraph

1A of Schedule 2, the person responsible, or

(ii)   

the Authority.

(9)   

In this section “the relevant statutory provisions” has the same meaning

as in section 31ZA.

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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.

40

(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

45

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

 
 

Human Fertilisation and Embryology Bill [HL]
Part 1 — Amendments of the Human Fertilisation and Embryology Act 1990

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(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.

5

(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 has 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

10

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—

15

(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

20

donor.

(5)   

In this section—

(a)   

“relevant individual” has the same meaning as in section 31;

and

(b)   

“the relevant statutory provisions” has the same meaning as in

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section 31ZA.

31ZF    

Power of Authority to keep voluntary contact register

(1)   

In this section and section 31ZG, a “voluntary contact register” means a

register of persons who have expressed their wish to receive

information about any person to whom they are genetically related as

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a consequence of the provision to any person of treatment services in

the United Kingdom before 1 August 1991.

(2)   

The Authority may—

(a)   

set up a voluntary contact register in such manner as it thinks

fit,

35

(b)   

keep a voluntary contact register in such manner as it thinks fit,

(c)   

determine criteria for eligibility for inclusion on the register and

the particulars that may be included,

(d)   

charge a fee to persons who wish their particulars to be entered

on the register,

40

(e)   

arrange for samples of the DNA of such persons to be analysed

at their request,

(f)   

make such arrangements as it thinks fit for the disclosure of

information on the register between persons who appear to the

Authority to be genetically related, and

45

(g)   

impose such conditions as it thinks fit to prevent a person (“A”)

from disclosing information to a person to whom A is

 
 

Human Fertilisation and Embryology Bill [HL]
Part 1 — Amendments of the Human Fertilisation and Embryology Act 1990

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genetically related (“B”) where that information would identify

any person who is genetically related to both A and B.

(3)   

The Authority may make arrangements with any person by whom a

voluntary contact register is kept before the commencement of this

section for the supply by that person to the Authority of the

5

information contained in the register maintained by that person.

31ZG    

Financial assistance for person setting up or keeping voluntary contact

register

(1)   

The Authority may, instead of keeping a voluntary contact register,

give financial assistance to any person who sets up or keeps a voluntary

10

contact register.

(2)   

Financial assistance under subsection (1) may be given in any form, and

in particular, may be given by way of—

(a)   

grants,

(b)   

loans,

15

(c)   

guarantees, or

(d)   

incurring expenditure for the person assisted.

(3)   

Financial assistance under subsection (1) may be given on such terms

and conditions as the Authority considers appropriate.

(4)   

A person receiving assistance under subsection (1) must comply with

20

the terms and conditions on which it is given, and compliance may be

enforced by the Authority.”

25      

Restrictions on disclosure of information

For section 33 of the 1990 Act (restrictions on disclosure of information)

substitute—

25

“33A    

Disclosure of information

(1)   

No person shall disclose any information falling within section 31(2)

which the person obtained (whether before or after the coming into

force of section 24 of the Human Fertilisation and Embryology Act

2008) in the person’s capacity as—

30

(a)   

a member or employee of the Authority,

(b)   

any person exercising functions of the Authority by virtue of

section 8B or 8C of this Act (including a person exercising such

functions by virtue of either of those sections as a member of

staff or as an employee),

35

(c)   

any person engaged by the Authority to provide services to the

Authority,

(d)   

any person employed by, or engaged to provide services to, a

person mentioned in paragraph (c),

(e)   

a person to whom a licence applies,

40

(f)   

a person to whom a third party agreement applies, or

(g)   

a person to whom directions have been given.

(2)   

Subsection (1) does not apply where—

 
 

Human Fertilisation and Embryology Bill [HL]
Part 1 — Amendments of the Human Fertilisation and Embryology Act 1990

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(a)   

the disclosure is made to a person as a member or employee of

the Authority or as a person exercising functions of the

Authority as mentioned in subsection (1)(b),

(b)   

the disclosure is made to or by a person falling within

subsection (1)(c) for the purpose of the provision of services

5

which that person is engaged to provide to the Authority,

(c)   

the disclosure is made by a person mentioned in subsection

(1)(d) for the purpose of enabling a person falling within

subsection (1)(c) to provide services which that person is

engaged to provide to the Authority,

10

(d)   

the disclosure is made to a person to whom a licence applies for

the purpose of that person’s functions as such,

(e)   

the disclosure is made to a person to whom a third party

agreement applies for the purpose of that person’s functions

under that agreement,

15

(f)   

the disclosure is made in pursuance of directions given by

virtue of section 24,

(g)   

the disclosure is made so that no individual to whom the

information relates can be identified,

(h)   

the disclosure is of information falling within section 31(2)(a)

20

and is made with the consent required by subsection (4),

(i)   

the disclosure is of information falling within any of paragraphs

(b) to (e) of subsection (2) of section 31 and is made—

(i)   

with the consent of the individual to whom it relates,

and

25

(ii)   

with the consent of any other individual who may be

identified from that information,

(j)   

the disclosure is of information which shows that an individual

who has attained the age of 18 is a relevant individual and is

made—

30

(i)   

with the consent of that individual,

(ii)   

in a case where the disclosure of that information would

also disclose any information falling within section

31(2)(a), with the consent required by subsection (4),

and

35

(iii)   

with the consent of any other individual who may be

identified from that information,

(k)   

the disclosure is of information which has been lawfully made

available to the public before the disclosure is made,

(l)   

the disclosure is made in accordance with sections 31ZA to

40

31ZE,

(m)   

the disclosure is required or authorised to be made—

(i)   

under regulations made under section 33C, or

(ii)   

in relation to any time before the coming into force of the

first regulations under that section, regulations made

45

under section 251 of the National Health Service Act

2006,

(n)   

the disclosure is made by a person acting in the capacity

mentioned in subsection (1)(a) or (b) for the purpose of carrying

out the Authority’s duties under section 8A,

50

 
 

Human Fertilisation and Embryology Bill [HL]
Part 1 — Amendments of the Human Fertilisation and Embryology Act 1990

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(o)   

the disclosure is made by a person acting in the capacity

mentioned in subsection (1)(a) or (b) in pursuance of an order of

a court under section 34 or 35,

(p)   

the disclosure is made by a person acting in the capacity

mentioned in subsection (1)(a) or (b) to the Registrar General in

5

pursuance of a request under section 32,

(q)   

the disclosure is made by a person acting in the capacity

mentioned in subsection (1)(a) or (b) to any body or person

discharging a regulatory function for the purpose of assisting

that body or person to carry out that function,

10

(r)   

the disclosure is made for the purpose of establishing in any

proceedings relating to an application for an order under

subsection (1) of section 54 of the Human Fertilisation and

Embryology Act 2008 whether the condition specified in

paragraph (a) or (b) of that subsection is met,

15

(s)   

the disclosure is made under section 3 of the Access to Health

Records Act 1990,

(t)   

the disclosure is made under Article 5 of the Access to Health

Records (Northern Ireland) Order 1993, or

(u)   

the disclosure is made necessarily for—

20

(i)   

the purpose of the investigation of any offence (or

suspected offence), or

(ii)   

any purpose preliminary to proceedings, or for the

purposes of, or in connection with, any proceedings.

(3)   

Subsection (1) does not apply to the disclosure of information in so far

25

as—

(a)   

the information identifies a person who, but for sections 27 to 29

of this Act or sections 33 to 47 of the Human Fertilisation and

Embryology Act 2008, would or might be a parent of a person

who instituted proceedings under section 1A of the Congenital

30

Disabilities (Civil Liability) Act 1976, and

(b)   

the disclosure is made for the purpose of defending such

proceedings, or instituting connected proceedings for

compensation against that parent.

(4)   

For the purpose of subsection (2)(h) and (j)(ii), the consent required by

35

this subsection is—

(a)   

where any person is identifiable from the information, the

consent of that person, or

(b)   

where treatment services were provided to two persons

together and both persons are identifiable, if disclosure is made

40

for the purpose of disclosing information about the provision of

treatment services to one of them, the consent of that person.

(5)   

For the purposes of subsection (2)(h), (i) and (j), consent to disclosure

given at the request of another shall be disregarded unless, before it is

given, the person requesting it takes reasonable steps to explain to the

45

individual from whom it is requested the implications of compliance

with the request.

(6)   

Information falling within section 31(2) cannot be disclosed by virtue of

subsection (2)(h), (i) or (j) to a person who has not attained the age of 18.

 
 

Human Fertilisation and Embryology Bill [HL]
Part 1 — Amendments of the Human Fertilisation and Embryology Act 1990

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(7)   

Paragraph (u) of subsection (2), so far as relating to disclosure for the

purpose of the investigation of an offence or suspected offence, or for

any purpose preliminary to, or in connection with proceedings, does

not apply—

(a)   

to disclosure of information enabling a person to be identified

5

as a person whose gametes were used in accordance with

consent given under paragraph 5 of Schedule 3 for the purposes

of treatment services or non-medical fertility services, in

consequence of which an identifiable individual was, or may

have been, born, or

10

(b)   

to disclosure, in circumstances in which subsection (1) of section

34 of this Act applies, of information relevant to the

determination of the question mentioned in that subsection,

made by any person acting in a capacity mentioned in any of

paragraphs (c) to (g) of subsection (1).

15

(8)   

In the case of information which relates to the provision of treatment

services for any identifiable individual, subsection (1) does not apply to

disclosure in an emergency, that is to say, disclosure made—

(a)   

by a person who is satisfied that it is necessary to make the

disclosure to avert an imminent danger to the health of an

20

individual with whose consent the information could be

disclosed under subsection (2)(h), and

(b)   

in circumstances where it is not reasonably practicable to obtain

that individual’s consent.

(9)   

In the case of information which shows that any identifiable individual

25

was, or may have been, born in consequence of treatment services,

subsection (1) does not apply to any disclosure which is necessarily

incidental to disclosure under subsection (2)(h) or (8).

(10)   

Subsection (1) does not apply to the disclosure to any individual of

information which—

30

(a)   

falls within subsection (2) of section 31 of this Act by virtue of

any of paragraphs (a) to (e) of that subsection, and

(b)   

relates only to that individual or, in the case of an individual

treated together with another, only to that individual and that

other.

35

(11)   

In subsection (2)—

(a)   

in paragraph (j) “relevant individual” has the same meaning as

in section 31,

(b)   

in paragraph (q) “regulatory function” has the same meaning as

in section 32 of the Legislative and Regulatory Reform Act 2006

40

(c. 51), and

(c)   

in paragraph (u) references to “proceedings” include any formal

procedure for dealing with a complaint.

33B     

Power to provide for additional exceptions from section 33A(1)

(1)   

Regulations may provide for additional exceptions from section

45

33A(1).

(2)   

No exception may be made under this section for—

(a)   

disclosure of a kind mentioned in paragraph (a) or (b) of

subsection (7) of section 33A, or

 
 

 
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