1995 Report
6. In July 1995 our predecessor Committee published
its Report, Human Genetics: the Science and its Consequences,
after a thorough inquiry involving nineteen oral evidence sessions
and 131 written memoranda.[13]
It was a wide-ranging and comprehensive Report, which tackled
an extensive number of topics arising from the developments in
genetics occurring at that time, including: genetic research in
the UK; clinical and industrial implications; the need for free
and informed consent of volunteers taking part in genetic screening;
the potential for discrimination and human rights abuses; counselling;
gene patenting (now an extremely controversial issue) and the
need for a Human Genetics Commission to monitor developments and
give advice to Government (four years prior to its actual establishment).
7. On the issue of insurance, the Committee suggested
that it would be possible to find a way for insurers to protect
themselves and for as many people as possible to obtain insurance.[14]
It was surprised that the ABI felt that "the use of genetic
information in insurance is limited and raises no new problems"[15]
and drew attention both to the risks of adverse selection (whereby
those with genetic diseases are more likely to insure themselves
than others) and to the potential creation of a group unable to
obtain insurance. In conclusion, the Committee recommended that
"the insurance industry be allowed one year in which to propose
a solution acceptable to Parliament, and that if it fails to do
so a solution should be sought, by legislation if necessary.".[16]
8. In its Response to the Committee, the Government
confirmed that it would keep in touch with developments in the
area, but could not see any widespread problems at that time.[17]
It stated that "the Government does not believe that legislation
would be appropriate now or in the foreseeable future.".[18]
Nor did it believe that a deadline should be imposed on the insurers
for their response, but rather that the insurance industry could
be expected to develop its own code of practice. It also thought
that a Human Genetics Commission was unnecessary.
9. In a follow-up Report on the Government's Response
in 1996, the Committee expressed its regret that the Government
had ignored its chief concern, that the use of test results might
lead to significant differentials in insurance pricing, and that
the Response might actually have reduced the urgency with which
insurers were developing their own code of practice.[19]
Subsequently, the Government did agree to another of the Committee's
recommendations, however, that a body be appointed which could
offer "a timely and independent view"[20]
on genetic testing. The Human Genetics Advisory Commission (HGAC),
though not the statutory body our predecessor Committee had recommended,
was established in 1996.
Scientific developments
10. Since our predecessor Committee's Reports in
1995 and 1996, there have been significant developments in the
science of genetics. Most notable was the completion of the first
draft of the sequence of the human genome in June 2000, and the
very recent publication of the sequences and map (February 2001).
A number of specific genes associated with, or even directly involved
in, the causation of a range of human diseases have also been
identified by scientists, including some genes which have been
isolated, their structure and, in some cases, their function determined.
Studies are being carried out to find out whether such genetic
defects can be corrected by insertion of the 'normal' gene - so
called 'gene therapy'. In addition, the development of proteomics
(the study of the protein products of the genome) is opening up
the possibility of understanding the molecular and cellular basis
of diseases.
11. The most significant development, for this inquiry,
has been in laboratory techniques for the detection of specific
genes or DNA sequences. For example, the gene for the dominant
and fatal condition known as Huntington's Chorea has been cloned
and a diagnostic test developed.[21]
The increasing use of 'gene-chip' (also known as 'micro-arrays')
technology, which allows the examination of many gene products
simultaneously, will have a significant impact on the diagnosis
of diseases, especially in relation to multi-genic conditions.
It is therefore becoming increasingly feasible for the identification
of disease-associated and other genes to be available at the level
of the hospital pathology laboratory, and, within the foreseeable
future, also in the primary healthcare surgery. The identification
of over 1.4 million Single Nucleotide Polymorphisms (SNPs) within
the human genome - points in the DNA sequence which differ between
individuals at the level of single nucleotides - now provide markers
to identify disease-associated genes in normal and patient populations.
5 Human Genetics: the Science
and its Consequences, Third Report of the Science and Technology
Committee, Session 1994-95, HC41-I. Back
6 www.doh.gov.uk/genetics/gaichuntington.htm Back
7 The working party launched
its consultation document on 19th March 2001, with
the closing date for submissions on 31st July. www.nuffield.org/bioethics Back
8 The House of Lords Committee
has already published its first volume of its evidence as: Human
Genetic Databases: Written evidence received up to 31 October
2000, House of Lords Select Committee on Science and Technology,
Session 1999-2000, HL Paper 115. It has now published its 4th
Report: Human Genetic Databases: challenges and opportunities
, House of Commons Select Committee on Science and Technology,
Session 2000-01, HL Paper 57. Back
9 Notes to accompany applications
to GAIC for approval to use genetic test results for insurance
risk assessment, GAIC, June 2000, annex B. Back
10 Evidence, p 51, paragraph
1. Back
11 Evidence, p 43, paragraph
(i). Back
12 Evidence, p 46, paragraph
1. Back
13 HC41-I. Back
14 Ibid.
paragraph 246. Back
15 Ibid.
paragraph 247. Back
16 Ibid.
paragraph 248. Back
17 Government's
Response to the Third Report of the House of Commons Select Committee
on Science and Technology, 1994-95 Session, DTI, Cm 3061,
January 1996, paragraphs 100-104. Back
18 Ibid.
paragraph 100. Back
19 Human Genetics:
The Government's Response, Third Report Session 1995-96, HC231-I,
paragraphs 17-19. Back
20 Ibid.
paragraph 19. Back
21 Huntington's
Chorea is a rare hereditary disease characterised by involuntary
movements and dementia. Each child of a parent with the disease
has a 50-50 chance of developing it. The usual time of onset is
between 35 and 45, but 10 per cent of cases occur under the age
of 20. Black's Medical Dictionary, ed. Gordon MacPherson,
1999, page 258. Back
