Human Fertilisation and Embryology Bill [HL]

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Session 2007 - 08
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Other Bills before Parliament

Human Fertilisation and Embryology Bill [HL]

Human Fertilisation and Embryology Bill [HL]
Part 1 — Amendments of the Human Fertilisation and Embryology Act 1990
25

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
a consequence of the provision to any person of treatment services in
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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,
(b)
keep a voluntary contact register in such manner as it thinks fit,
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(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,
(e)
arrange for samples of the DNA of such persons to be analysed
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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
(g)
impose such conditions as it thinks fit to prevent a person (“A”)
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from disclosing information to a person to whom A is
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
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section for the supply by that person to the Authority of the
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,
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give financial assistance to any person who sets up or keeps a voluntary
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,
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(b)
loans,
(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.
40
(4)
A person receiving assistance under subsection (1) must comply with
the terms and conditions on which it is given, and compliance may be
enforced by the Authority.”
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Restrictions on disclosure of information
For section 33 of the 1990 Act (restrictions on disclosure of information)
45

Human Fertilisation and Embryology Bill [HL]
Part 1 — Amendments of the Human Fertilisation and Embryology Act 1990
26

substitute—
“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
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2008) in the person’s capacity as—
(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
10
staff or as an employee),
(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),
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(e)
a person to whom a licence applies,
(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—
(a)
the disclosure is made to a person as a member or employee of
20
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
which that person is engaged to provide to the Authority,
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(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,
(d)
the disclosure is made to a person to whom a licence applies for
30
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,
(f)
the disclosure is made in pursuance of directions given by
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virtue of section 24,
(g)
the disclosure is made so that no individual can be identified
from the information,
(h)
the disclosure is of information other than identifying donor
information and is made with the consent required by section
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33B,
(i)
the disclosure—
(i)
is made by a person who is satisfied that it is necessary
to make the disclosure to avert an imminent danger to
the health of an individual (“P”),
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(ii)
is of information falling within section 31(2)(a) which
could be disclosed by virtue of paragraph (h) with P’s
consent or could be disclosed to P by virtue of
subsection (5), and

Human Fertilisation and Embryology Bill [HL]
Part 1 — Amendments of the Human Fertilisation and Embryology Act 1990
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(iii)
is made in circumstances where it is not reasonably
practicable to obtain P’s consent,
(j)
the disclosure is of information which has been lawfully made
available to the public before the disclosure is made,
(k)
the disclosure is made in accordance with sections 31ZA to
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31ZE,
(l)
the disclosure is required or authorised to be made—
(i)
under regulations made under section 33D, or
(ii)
in relation to any time before the coming into force of the
first regulations under that section, under regulations
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made under section 251 of the National Health Service
Act 2006,
(m)
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,
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(n)
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,
(o)
the disclosure is made by a person acting in the capacity
mentioned in subsection (1)(a) or (b) to the Registrar General in
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pursuance of a request under section 32,
(p)
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,
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(q)
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,
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(r)
the disclosure is made under section 3 of the Access to Health
Records Act 1990,
(s)
the disclosure is made under Article 5 of the Access to Health
Records (Northern Ireland) Order 1993, or
(t)
the disclosure is made necessarily for—
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(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
40
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
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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)
Paragraph (t) of subsection (2), so far as relating to disclosure for the
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purpose of the investigation of an offence or suspected offence, or for

Human Fertilisation and Embryology Bill [HL]
Part 1 — Amendments of the Human Fertilisation and Embryology Act 1990
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any purpose preliminary to, or in connection with proceedings, does
not apply—
(a)
to disclosure of identifying donor information, or
(b)
to disclosure, in circumstances in which subsection (1) of section
34 of this Act applies, of information relevant to the
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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).
(5)
Subsection (1) does not apply to the disclosure to any individual of
information which—
10
(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
who is treated together with, or gives a notice under section 37
or 44 of the Human Fertilisation and Embryology Act 2008 in
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respect of, another, only to that individual and that other.
(6)
In subsection (2)—
(a)
in paragraph (p) “regulatory function” has the same meaning as
in section 32 of the Legislative and Regulatory Reform Act 2006,
and
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(b)
in paragraph (t) references to “proceedings” include any formal
procedure for dealing with a complaint.
(7)
In this section “identifying donor information” means information
enabling a person to be identified as a person whose gametes were used
in accordance with consent given under paragraph 5 of Schedule 3 for
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the purposes of treatment services or non-medical fertility services in
consequence of which an identifiable individual was, or may have
been, born.
33B
Consent required to authorise certain disclosures
(1)
This section has effect for the purposes of section 33A(2)(h).
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(2)
Subject to subsection (5), the consent required by this section is the
consent of each individual who can be identified from the information.
(3)
Consent in respect of a person who has not attained the age of 18 years
(“C”) may be given—
(a)
by C, in a case where C is competent to deal with the issue of
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consent, or
(b)
by a person having parental responsibility for C, in any other
case.
(4)
Consent to disclosure given at the request of another shall be
disregarded unless, before it is given, the person requesting it takes
40
reasonable steps to explain to the individual from whom it is requested
the implications of compliance with the request.
(5)
In the case of information which shows that any identifiable individual
(“A”) was, or may have been, born in consequence of treatment
services, the consent required by this section does not include A’s
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consent if the disclosure is necessarily incidental to the disclosure of
information falling within section 31(2)(a).

Human Fertilisation and Embryology Bill [HL]
Part 1 — Amendments of the Human Fertilisation and Embryology Act 1990
29

(6)
The reference in subsection (3) to parental responsibility is—
(a)
in relation to England and Wales, to be read in accordance with
the Children Act 1989;
(b)
in relation to Northern Ireland, to be read in accordance with
the Children (Northern Ireland) Order 1995;
5
(c)
in relation to Scotland, to be read as a reference to parental
responsibilities and parental rights within the meaning of the
Children (Scotland) Act 1995.
33C
Power to provide for additional exceptions from section 33A(1)
(1)
Regulations may provide for additional exceptions from section
10
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 (4) of section 33A, or
(b)
disclosure in circumstances in which section 32 of this Act
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applies of information having the tendency mentioned in
subsection (2) of that section, made by any person acting in a
capacity mentioned in any of paragraphs (c) to (g) of subsection
(1) of section 33A.
33D
Disclosure for the purposes of medical or other research
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(1)
Regulations may—
(a)
make such provision for and in connection with requiring or
regulating the processing of protected information for the
purposes of medical research as the Secretary of State considers
is necessary or expedient in the public interest or in the interests
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of improving patient care, and
(b)
make such provision for and in connection with requiring or
regulating the processing of protected information for the
purposes of any other research as the Secretary of State
considers is necessary or expedient in the public interest.
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(2)
Regulations under subsection (1) may, in particular, make provision—
(a)
for requiring or authorising the disclosure or other processing
of protected information to or by persons of any prescribed
description subject to compliance with any prescribed
conditions (including conditions requiring prescribed
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undertakings to be obtained from such persons as to the
processing of such information),
(b)
for securing that, where prescribed protected information is
processed by a person in accordance with the regulations,
anything done by that person in so processing the information
40
must be taken to be lawfully done despite any obligation of
confidence owed by the person in respect of it,
(c)
for requiring fees of a prescribed amount to be paid to the
Authority in prescribed circumstances by persons in relation to
the disclosure to those persons of protected information under
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those regulations,
(d)
for the establishment of one or more bodies to exercise
prescribed functions in relation to the processing of protected
information under those regulations,

Human Fertilisation and Embryology Bill [HL]
Part 1 — Amendments of the Human Fertilisation and Embryology Act 1990
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(e)
as to the membership and proceedings of any such body, and
(f)
as to the payment of remuneration and allowances to any
member of any such body and the reimbursement of expenses.
(3)
Where regulations under subsection (1) require or regulate the
processing of protected information for the purposes of medical
5
research, such regulations may enable any approval given under
regulations made under section 251 of the National Health Service Act
2006 (control of patient information) to have effect for the purposes of
the regulations under subsection (1) in their application to England and
Wales.
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(4)
Subsections (1) to (3) are subject to subsections (5) to (8).
(5)
Regulations under subsection (1) may not make any provision
requiring or authorising the disclosure or other processing, for any
purpose, of protected information, where that information is
information from which an individual may be identified, if it would be
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reasonably practicable to achieve that purpose otherwise than pursuant
to such regulations, having regard to the cost of and technology
available for achieving that purpose.
(6)
Regulations under this section may not make provision for or in
connection with the processing of protected information in a manner
20
inconsistent with any provision made by or under the Data Protection
Act 1998.
(7)
Subsection (6) does not affect the operation of provisions made under
subsection (2)(b).
(8)
Before making any regulations under this section the Secretary of State
25
shall consult such bodies appearing to the Secretary of State to
represent the interests of those likely to be affected by the regulations
as the Secretary of State considers appropriate.
(9)
In this section—
“prescribed” means prescribed by regulations made by virtue of
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this section,
“processing”, in relation to information, means the use, disclosure,
or obtaining of the information or the doing of such other things
in relation to it as may be prescribed for the purposes of this
definition, and
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“protected information” means information falling within section
31(2).”