Submission from the Parkinson's Disease
Society of the United Kingdom
1.1. The Parkinson's Disease Society (PDS)
welcomes the Science and Technology Committee's inquiry into proposals
published by the Department of Health in December 2006 regarding
the regulation of the creation of hybrid and chimeric embryos
for research purposes.
1.2. The PDS believes that research involving
hybrid cell lines offers exciting possibilities for the development
of leading edge technologies that could lead in turn to the development
of new treatments and ultimately potential cures for a wide rage
of conditions, such as Parkinson's, which alone affects millions
of people in the UK.
1.3. We are concerned about the potential
implications the proposed Government reforms to the Human Fertilisation
and Embryology Act (1990) could have on this important area of
research, and have set out the nature of our concerns in the following
submission. We are urging the Government to fully engage with
the research community and patient groups on this specific issue
before introducing legislation that could have the effect of preventing
or delaying progress in these important research approaches.
2.1. Parkinson's disease is a progressive
neurological disorder that affects all activities of daily living
including talking, walking, communication, swallowing and writing.
It is estimated that 120,000 people in the UK have Parkinson's,
one in 500 of the general population. Approximately 10,000 people
are newly diagnosed with Parkinson's each year in the UK.
2.2. Parkinson's occurs as a result of a
loss of cells that produce the neuro-transmitter dopamine. Dopamine
is one the chemical messengers that we have in the brain which
enables people to perform coordinated movements. As yet it is
not known why these cells die.
2.3. Parkinson's is often characterised
by three key motor symptoms: tremor, muscle rigidity and slowness
of movement. Other symptoms that may develop include difficulties
with balance, sleeping problems, speech difficulties, problems
with the digestive system, pain, depression and dementia, however
Parkinson's affects every individual differently and not everyone
will experience all of these symptoms.
2.4. The cause of Parkinson's is not known,
however the best available research indicates that it is likely
to be caused by a combination of genetic and environmental factors.
In the last fifteen years a number genetic mutations linked to
certain forms of Parkinson's have been identified, although research
to date suggests this accounts for less than 10% of Parkinson's
2.5. There is currently no known cure for
Parkinson's. Although a number of treatment options are available
to treat the symptoms, none of the existing therapies can halt
the disease's underlying progression. Medication is most commonly
prescribed, however it is in most cases only effective for a relatively
short time. Side-affects inevitably appear that can be as disabling
as the original symptoms. Surgical interventions are also available
in the form of deep-brain stimulation, however only a relatively
small proportion of people with Parkinson's will meet the clinical
criteria for this procedure.
2.6. Stem cell research offers a significant
opportunity for gaining a greater insight into Parkinson's and
for exploring techniques to replace with healthy cells the dopamine
producing nerve cells that have died. This may ultimately lead
to a cure, allowing people to lead a life that is free from the
symptoms of Parkinson's.
3. THE PARKINSON'S
3.1. The PDS was established in 1969 and
has approximately 30,000 members, a further 30,000 supporters
and over 300 local branches and support groups throughout the
3.2. The Society provides support, advice
and information to people with Parkinson's, their carers, families
and friends, and information and professional development opportunities
to health and social services professionals involved in their
management and care. The Society also develops models of good
practice in service provision, such as Parkinson's Disease Nurse
Specialists, and campaigns for changes that will improve the lives
of people affected by Parkinson's.
3.3. In 2006 the Society spent more than
£4 million on funding research into the cause, cure and prevention
of Parkinson's, and improvements in available treatments. Our
members play a key role in shaping our research priorities and
assessing all applications for research funding.
3.4. The PDS has invested more than £1.5
million in stem cell research over the past five years and currently
funds 12 projects at research facilities throughout the UK. The
Society is a member of the UK Stem Cell Funders' Forum, which
was established in response to recommendation 9 of the Pattison
that emphasised the need for co-ordination between organisations
supporting stem cell research.
3.5. Our members have demonstrated strong
support for stem cell research to date and have played an active
role in campaigning in support of this area of research, including
playing a key role in drafting the Society's response to the Donaldson
given to the House of Lords Select Committee on stem cell research.
4. THE GOVERNMENT'S
4.1. The PDS is concerned that the Government
proposes to ban the creation of hybrid and chimeric embryos in
vitro despite their apparent recognition of the potential
scientific value that leading edge techniques such as these may
hold for research into serious medical conditions.
4.2. The Government proposals state that
the forthcoming Bill, which revises the Human and Fertilisation
Act (1990), will allow for regulations to be drawn up, outlining
the circumstances in which hybrid and chimeric embryos can be
created for research purposes. However we are concerned that such
a delayed approach could severely hamper progress in this area.
Even if regulations were brought forward at the earliest opportunity,
there would still be a missed opportunity to have this matter
of considerable public interest fully debated by Parliament. In
the worst-case scenario, regulations may never materialise, as
has happened following previous legislation.
4.3. The PDS notes that the Government's
proposals have been drawn up following a consultation largely
concerned with reproductive technologies. We are urging the Government
to engage fully with the research community and patient groups
on the specific issue of research involving the creation of hybrid
and chimeric embryos in vitro prior to the introduction
of any legislation that could have the effect of delaying progress
or preventing research of this kind.
5. DEFINING HYBRID
5.1. The PDS urges the Government to use
the forthcoming legislation to clarify the definitions of hybrid
and chimeric embryos. We propose that the definition used in Canadian
law should be taken as a starting point, as suggested previously
by the Science and Technology Committee.
Definitions of chimeras and hybrids in Canadian
A "chimera" is
(i) an embryo into which a cell of any non-human
life form has been introduced; or
(ii) an embryo that consists of cells of more
than one embryo, foetus or human being.
A hybrid is:
(i) a human ovum that has been fertilized by
a sperm of a non-human life form;
(ii) an ovum of a non-human life form that has
been fertilized by a human sperm;
(iii) a human ovum into which the nucleus of
a cell of a non-human life form has been introduced; (iv) an
ovum of a non-human life form into which the nucleus of a human
cell has been introduced; or
(v) a human ovum or an ovum of a non-human life
form that otherwise contains haploid sets of chromosomes from
both a human being and a non-human life form.
6. HYBRID CELL
6.1. Using definition (iv) of Canadian law,
hybrids are derived from animal eggs that have had their nucleus
removed and replaced with the nucleus of a human cell. These can
then be used to study diseases with genetic factors that are associated
with certain forms of Parkinson's disease.
6.2. The generation of hybrid cell lines
is a key aspect of stem cell research and the development of new
technologies that will be vital for the ultimate development of
a cure for conditions such as Parkinson's. Hybrid cell lines are
much easier to generate than human stem cells and provide a tool
with which to gain a greater insight into how to transform stem
cells into other types of cells, such as nerve cells.
6.3. The generation of hybrid cells of this
type is carried out in three stages:
Isolation of animal eggs.
Removal of the genetic material and
replace it with that derived from a human cell.
Growth of the cells in the laboratory
to give rise to stem cells.
6.4. The ovum will not be re-implanted into
the uterus so an embryo cannot be generated and would only be
grown for up to 14 days.
The cells will be treated in the same way as stem cells derived
from human embryos.
7. RESEARCH INTO
7.1. Research involving hybrid cell lines
offers considerable potential to develop our understanding of
Parkinson's and its treatment by:
(a) Offering a greater understanding of how
to transform stem cells into dopamine-producing nerve cells. This
may be of use in the future for transplantation of the cells into
the brains of people with Parkinson's to replace those cells that
(b) Creating stem cells containing DNA derived
from skin cells obtained from people with a genetic form of Parkinson's.
These can be transformed into nerve cells to increase our understanding
of the effect of these mutations on the cells, how they function,
and why the nerve cells are more likely to die in Parkinson's.
(c) From point 2, it may then be possible
to identify targets for new drugs that would halt or reverse the
progression of the condition or even prevent it.
(d) The technology underlying the generation
of hybrid cell lines will also inform on the potential for therapeutic
cloning which would provide new cells, likely to be genetically
identical to the patient, with a greatly reduced risk of rejection,
a common problem associated with the transplantation procedure.
8. THE GOVERNMENT'S
8.1. The PDS welcomes the Government's support
for stem cell research to date, including their pledge to invest
an additional £50 million into stem cell research in the
years 2006-07 and 2007-08 in response to the Pattison Report.
We also note the announcement this month by the Scottish Executive
of their investment of £24 million for the Scottish Centre
for Regenerative Medicine (SCRM), for the development of regenerative
medicine using stem cell technologies.
8.2. The PDS further welcomes the Government's
commitments, made in response to the Pattison report, to ensure
a flexible regulatory framework that does not stifle the development
of the full range of safe and effective new cell therapies for
the benefit of patients and to promote public dialogue on stem
We feel these two points reinforce our call to have research involving
hybrid cell lines addressed explicitly in the forthcoming legislation,
rather than opting for an outright ban with the promise of regulations,
for which there is no timescale attached, to follow.
41 UK Stem Cell Initiative report and recommendations,
November 2005. Back
Stem cell research: medical progress with responsibility,
a report by the Chief Medical Officer's expert group, Department
of Health, June 2000. Back
The PDS gave written and oral evidence to the House of Lords
Select Committee's inquiry into stem cell research-report published
February 2002. Back
Review of the Human Fertilisation and Embryology Act: Proposals
for revised legislation (including establishment of the Regulatory
Authority for Tissue and Embryos), Department of Health, December
Select Committee on Science and Technology's inquiry into Human
Reproductive Technologies and the Law, paragraph 64. Back
Taken from the Select Committee on Science and Technology's inquiry
into Human Reproductive Technologies and the Law, paragraph 64. Back
According to current legislation on the study of human embryonic
stem cells, the HFE Act (1990) Back
UK Stem Cell Initiative report and recommendations, November
Government response to UK Stem Cell Initiative report and recommendations,
December 2005. Back