Research Ethics for Alzheimers Associations

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Research Ethics for Alzheimers Associations

• Jim Jackson, Chief Executive, Alzheimer Scotland
• Chris McGregor, Vice-Convener, Alzheimer Scotland
  

Friday 13 October 2006, 22nd Conference of
Alzheimers Disease International,
Berlin www.alzscot.org/pages/presentations.htm
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1 Introduction

• The story of how an Alzheimers association made
  two ethical decisions about research policy.
• The views of the Chief Executive will be
  contrasted with those of the Vice-Convener of
  Alzheimer Scotland.
• Why use animals for research?
• Why use embryonic stem cells for research?

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The Chief Executives perspective (before survey)
1 Interest in research

• To understand claims made by scientists
• To comment intelligently
• To promote research into understanding the
  illness and better treatments

2 The media ask awkward questions

• Does the means justify the ends?

No matter how serious the illness, are there some
things scientists should not do?
4 Whose opinion should I give?
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3 The Vice-Conveners or lay perspective (before
survey)

• Broadly in favour of research to help find cure
• Concern for humane treatment of animals against
  zoos and circuses
• Use of stem cells OK as long as not harming and
  not leading to cloning
• Aware of questions being asked within and outwith
  our organisation
• Note sure of what legislation allows

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4 What did we decide to do?

• Explain what we knew about stem cell research and
  animal research in dementia
• Survey our members (2,700), our staff (700) and
  volunteers (600)

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Stem cell research and animal research in
dementia
Introduction Alzheimer's disease and other types
of dementia are now a key focus for medical
research worldwide. Researchers are
investigating how dementia affects the normal
functioning of the brain and looking for new ways
to treat it. Often, dementia research involves
the use of animals. There is now also growing
interest in the treatment potential of stem cells
derived from human embryos. Both these types of
research raise ethical questions and are
controversial. Some people feel very strongly one
way or the other about stem cell or animal
research. Many more feel they lack the
information to come to an informed opinion. This
information sheet gives an explanation of each
type of research, as it is used in dementia, and
looks at the issues. Stem cell research What are
stem cells? Living creatures are made up of many
cells, which form the body and all its organs.
Humans have about 300 different types of cell,
each specialised for a particular job for
example, brain cells, blood cells, skin cells and
muscle cells. Although they all contain the full
genetic code, different parts of it are switched
on and off in different types of cell so, for
example, liver cells cant do the job of bone
cells. Within the brain, there are many kinds of
cell which do specialised jobs.
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Extract from Questionnaire 2005
Alzheimer Scotland What do you think? We would
like to know your opinions? Please fill in this
brief questionnaire, detach it and return it in
the enclosed Freepost envelope by 29 July 2005.
If you have further comments, please feel free to
attach an extra sheet. Please note, these
questions relate to medical research into the
causes and treatment of dementia, and to basic
research which supports this, and not to any
other purposes. Question 1 Stem cell
research Yes No Dont Know ? ? ? Is using
human embryos for stem cell research ever
acceptable? ? ? ? Is it acceptable to use
spare embryos donated by couples having
fertility treatment, which would otherwise
be destroyed? ? ? ? Is it acceptable to use
material from aborted foetuses which would
otherwise be disposed of? ? ? ? Is it acceptable
to use therapeutic cloning to create a human
embryo for research purposes, in order to
use stem cells from it? Comments
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5 Why use animals for research?
i) The Chief Executives views at time of survey

• Scientific research allows hypotheses to be
  tested and variables controlled
• Scientific research increases understanding about

• how the living body works
• how it goes wrong
• how treatments/drugs may work

• some experiments cannot be done in the test tube
• some experiments cannot be done on humans

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5 continued

• increased understanding and treatments important
  enough to justify using animals to benefit us
  through research
• we use animals for our benefit in other ways

• eating meat
• leather shoes

• experiments need not cause pain
• research regulated to prevent unnecessary
  research
• some animal nervous systems are much simpler than
  human and therefore easier to understand how they
  work

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6 Why use animals for research?
ii) The Vice-Conveners views at time of survey

• not sure if scientists should be trusted (BSE,
  genetically modified food etc)
• concerned about loss of life, distress and pain
  for animals
• animals are not the same as humans, therefore
  animal research finding may not be applicable to
  people, eg the American vaccine
• there may be more alternatives if animal research
  banned

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7 Why use animals for research?
iii) Survey results

• Completed questionnaires 1,041
• Member response rate 27
• Staff response rate 25

Is it acceptable to use animals for research into
the causes of dementia?
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Is it acceptable to use animals for research into
the causes of dementia? Members diagnosed with
dementia (13)
Is it acceptable to use animals for research into
the causes of dementia? Members who are either a
relative or friend of someone with dementia (92)
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Should Alzheimer Scotland fund research projects
which involve animal research?
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8 Why use animals for research?
iv) The policy

• To support and fund animal research involving
  animals where there is no alternative and the
  animal would not be subject to pain/extreme
  discomfort.

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9 Embryonic stem cell research is controversial
Recent correspondence to The Herald, Scotlands
leading newspaper
But it is worrying that, as a nation, we are
prepared to pursue a research agenda despite the
possibility that in doing so we are destroying
human persons. 18,000 human embryos have
already been destroyed by UK scientists. Yet we
continue to increase these numbers, ignoring
ethical dubiety.
David Moyes, Scottish Council on Human Bioethics
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9 Continued
Crucially for the question of moral status the
embryos in question have no central nervous
system, no brain, no capacity to suffer, they
consist of a few hundred cells. Professor Udo
Shuklenk, Ethics in Public Policy and Corporate
Governance, Glasgow Caledonian University
It is misleading in the extreme to call embryos
persons, as most embryos, even those naturally
conceived, never result in babies due to the high
natural rate of embryo failure. Dr David Shaw,
Centre for Ethics, Philosophy and Public Affairs,
University of St Andrews
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9 Continued
What gives people who share a faith perspective
the confidence to stand in opposition to those
who want to experiment on this human conceptus
is that they believe every human being is
created by God and deserves our protection and
respect. Mario Conti Archbishop of Glasgow
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10 Why use embryonic stem cells for research?
i) The Chief Executives views at time of survey

• an exciting new area for research
• great potential because it avoids the rejection
  of cells introduced to the body that have a
  different genetic make up
• stem cells may also be used to test new drug
  therapies
• risks raising expectations regarding treatments
• illnesses such as dementia and Parkinsons
  disease are being used as weapons against those
  opposing stem cell research

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10 Why use embryonic stem cells for research?
ii) The Vice-Conveners views at time of survey

• importance of knowing what UK law is regarding
  safeguards
• the background paper was immensely useful
  stimulated thinking
• the risk of losing support for the association
• happy about using spare embryos
• does not seem right to create human embryos for
  research
• how old should an embryo be before it is given
  legal rights? 14 days is what UK law says
• is it natural to be experimenting with something
  that is so fundamental to life?
• will this not lead to cloning?
• what are the risks?
• why not use stem cells from umbilical cord blood,
  bone marrow and dead embryos?
• we have to think about respect for religious views

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10 Why use embryonic stem cells for research?
iii) Survey results
Is using human embryos for stem cell research
ever acceptable?
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Is it acceptable to use therapeutic cloning to
create a human embryo especially for research
purposes?
Is it acceptable to use therapeutic cloning to
create a human embryo especially for research
purposes? Members who are diagnosed with
dementia (13)
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Is it acceptable to use therapeutic cloning to
create a human embryo especially for research
purposes? Members who are relatives or a friend
of someone with dementia (92)
Should Alzheimer Scotland fund research projects
which involve stem cell research?
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10 Why use embryonic stem cells for research?
iv) The policy

• Alzheimer Scotland supports scientific
  endeavours to increase understanding of the
  causes of dementia and seek effective treatment
  for it.
• Stem cell research is a welcome new avenue for
  scientists to explore in addition to existing
  areas of study.

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iv) The policy - continued

• The majority of Alzheimer Scotland members and
  staff support the use of human embryos for stem
  cell research. However, a substantial minority
  have strong reservations about the use of
  therapeutic cloning to create a human embryo for
  research purposes.
• When Alzheimer Scotland considers applications
  for its Research Fellowships it will consider
  those involving stem cell research on their
  merits and take into account the views which have
  been expressed by members.

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11 Conclusions

• Members and staff are interested and welcome
  being involved
• Presenting the arguments for and against is
  not easy
• Getting the questions right is important
• The Chief Executive can now speak legitimately on
  behalf of Alzheimer Scotland members
• The differences between staff and members are
  worth further investigation
• Ongoing debate about what we understand about
  these difficult issues

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12 And finally .

• Now you know what we have done, what will your
  Alzheimer association do?

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www.alzscot.org/pages/presentations.htm
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What do you think?

• i) Is it acceptable to use fruit flies for
  scientific research?

Yes / No / Dont know
ii) Is it acceptable to use mice or rats for
scientific research?
Yes / No / Dont know
iii) Is it acceptable to use monkeys for
scientific research?
Yes / No / Dont know