Public views on regenerative
medicine
Version 1.0 April 2014
Public views on regenerative medicine
Table of Content
1
Executive Summary ................................................................................................... 1
2
Introduction ................................................................................................................ 2
3
Public views................................................................................................................ 3
4
Public views presented in media .............................................................................. 8
5
Analysis of views and gap analysis .......................................................................... 9
Appendix 1 Definition of techniques involved in regenerative medicine .......................10
Appendix 2: summary of sources of information ............................................................11
i
Public views on regenerative medicine
This report is a review of currently available information on the views and values of the public on
regenerative medicine available at time of writing, March 2014. It provides a snapshot of public views
and is a live document, open to comments and additions.
The report will be useful to those interested in the public’s views on new and emerging areas of
science and technology and is particularly targeted to assist those involved in policy involving science
and technology as they provide a background to what is already known about public views.
It is worth noting that this report focuses on a high-level account of public views summarised across
various different engagement methodologies. It does not intend to capture the nuances or reasoning
behind those methodologies.
The views and values of the public will change and new information will become available. Hence, we
welcome your views, insights or comments.
•
Do you know of further evidence which we should include?
•
Do you have any comments or suggestions to improve the report?
You can comment here.
This report, and the others in the series, has been produced by Sciencewise.
Sciencewise is a BIS funded programme to encourage the more widespread use of public dialogue in
policy involving science and technology. Sciencewise provides advice and guidance to help those
involved in the development of policy to understand and to take into account the views and values of
the public in the development of policy involving science and technology. Sciencewise is able to
provide:

Advice and guidance on public dialogue and engagement.

Assistance with the implementation of engagement as appropriate

Financial support for the implementation of selected public dialogue projects

Training and mentoring to assist those involved in policy development to build their
understanding of the benefits and their confidence around engagement with the public.
ii
Public views on regenerative medicine
1 Executive Summary
Regenerative medicine is a complex subject with many related techniques, and there is
much media led discussion and reporting of the subject. This report summarises public views
on regenerative medicine over the last 5 years. The discussion tends to be around specific
techniques within regenerative medicine such as stem cell research rather than regenerative
medicine as a whole.
The Human Fertilisation and Embryology Act, which regulates the use of live human
embryos in research, was passed by Parliament in 1990. This act was updated in 2001 to
include the new purposes of: increasing knowledge about the development of embryos,
increasing knowledge about serious disease and enabling any such knowledge to be applied
in developing treatments for serious disease (the primary purposes of stem cell research.
In the last few years, the Government has provided a high level of support for regenerative
medicine under the Biomedical Catalyst programme and via the Department of Health’s
National Institute for Health Research (NIHR) which funds infrastructure in the NHS for
translational research in regenerative medicine, in particular through Biomedical Research
Centres (BRCs) and Units (BRUs). In 2013 a Regenerative Medicine Expert Group was
established as a result of a Parliamentary enquiry by the Select Committee on Science and
Technology which focused on UK expertise in the field, the applications of this research to
treatments, the regulatory and financial barriers to translation and commercialisation of the
findings of this research, and international comparisons.
The main source of public views on this topic are a UK based stem cell public dialogue, two
European studies, and many US studies, of which two has been included here for reference.
In addition there are many media articles and fora on aspects of regenerative medicine.
The main conclusions from this review are that:
•
•
•
•
•
The majority of the public support regenerative medicine providing that is subject
to strict regulatory constraint, and that support is increasing with time.
Within regenerative medicine there are specific techniques which are more wellknown to the public and which have higher or lower support depending on the
technique. For example adult stem cell research is supported over embryonic
research.
Research that will lead to medical treatments is supported over research that will
lead to cosmetic enhancement.
Treatments should be available to all rather than the rich.
Media tends to be overoptimistic in terms of timescales and potential results.
1
Public views on regenerative medicine
2 Introduction
Regenerative medicine is a collection of emerging and related fields. At its simplest it can be
defined as a therapeutic intervention which “replaces or regenerates human cells, tissues or
organs, to restore or establish normal function1. Regenerative medicine deploys small
molecule drugs, biologics, medical devices and cell-based therapies. However, the term is
more colloquially used to mean advanced therapies based on cells, tissue engineering,
developmental and stem cell biology, gene therapy, cellular therapeutics and new
biomaterials (scaffolds and matrices)2. The public knowledge and perception of techniques
within Regenerative Medicine vary widely with the most well-known techniques involve the
use of stem cells.
The potential for regenerative medicine is huge with the promise of longer healthy lifestyles.
Research in Regenerative Medicine is being driven by demographic changes with an aging
population and by the emergence of specific problems associated with current lifestyle
leading to obesity and related diseases. These issues are putting great cost pressure on our
healthcare system. Regenerative Medicine could potentially lead to cost savings in public
healthcare by reducing the need for long term care, and by leading to treatments for the
effects of obesity and Type 2 diabetes. The area is seen as one where the UK could be one
of the world leaders, and addition development of specialised regenerative treatments would
also provide a boost for the Pharmaceutical sector which has been hit by closure of patents
on some of the largest selling drugs2.
Regenerative medicine is highly regulated in the UK and other European countries but less
so elsewhere. This could lead to health tourism elsewhere as UK citizens seek perceived
benefits of stem cell treatment.
The timescale for the adoption of regenerative medicine is long, but the development of the
techniques has seen rapid acceleration recently. Researchers have been investigating adult
stem cells since the 1940’s and bone marrow transplants have been successfully conducted
for over 50 years. In 1981 Sir Martin Evans became the first researcher to isolate and
characterise embryonic stem cells in mice, and it was not until 1998 that Professor James
Thomson isolated human embryonic stem cells. The discovery of induced pluripotent stem
cells, (iPSCS) in 2006, which can be generated directly adult stem cells, hold great promise
in the field of regenerative medicine because they can propagate indefinitely, as well as give
rise to every other cell type in the body.
These developments promised huge potential, but also challenged the existing regulatory
framework. A Committee of Inquiry into Human Fertilisation and Embryology was established
in 1982, culminating with the much cited “Warnock Report” which was published in 1984. The
Committee afforded the human embryo with a “special” status and laid the groundwork for
the eventual passing of the Human Fertilisation and Embryology Act by Parliament in 1990.
This Act requires researchers to get a licence from the Human Fertilisation & Embryology
Authority (HFEA) but its remit over the stem cells ends once they are separated from the
embryo.
This Act was amended after the successful isolation of human embryonic stem cells (human
ESC) in 2001 to permit research on human ESC for further strictly regulated purposes. More
1
Mason C, Dunnill P. A brief definition of regenerative medicine. Regen Med, 2008; 3:1-5.
BIS: Department for Business Innovation and Skills; Offices for Life Sciences; Taking Stock of Regenerative
Medicine in the United Kingdom; July 2011.
2
2
Public views on regenerative medicine
recently the Act was revised and updated in 2008, before passing into law in October 2009.
In doing so, the UK has developed a strict but facilitating regulatory regime for research and
use of human ESC-based regenerative medicine2.
In the last few years, the Government has provided a high level of support for regenerative
medicine research. A number of regenerative medicine projects have been awarded funding
under the Biomedical Catalyst programme which is an integrated translational funding
programme jointly operated by the Medical Research Council (MRC) and the Technology
Strategy Board (TSB) to support academics and UK SMEs to develop innovative solutions to
healthcare challenges. In addition, the Regenerative Medicine Platform, funded by the
EPSCR and MRC, has been set up to address the technical and scientific challenges
associated with translating promising scientific discoveries in this area towards clinical
impact.
In addition, the Department of Health’s National Institute for Health Research (NIHR) funds
infrastructure in the NHS for translational research in regenerative medicine, in particular
through Biomedical Research Centres (BRCs) and Units (BRUs). These are established in
leading NHS and university partnerships to drive progress on innovation and translational
research in biomedicine into NHS practice. In 2011, the Government announced £800 million
NIHR funding for five years from April 2012 for 11 BRCs and 20 BRUs. As part of this, the
BRCs and BRUs are currently undertaking £9 million per annum of world-leading
translational research in regenerative medicine across a range of disease areas.
In 2012 the Chancellor of the Exchequer George Osborne identified regenerative medicine
as one of eight great technologies that had the potential to stimulate future growth in the UK.
As a result the techniques are seen as a priority for future funding.
In 2013 a Regenerative Medicine Expert Group was established as a result of a
Parliamentary enquiry by the Select Committee on Science and Technology3 which focused
on UK expertise in the field, the applications of this research to treatments, the regulatory
and financial barriers to translation and commercialisation of the findings of this research,
and international comparisons.
3 Public views
The views and values of the public summarised below are identified using the sources
detailed in Appendix1. The main sources of public views were put together through online
research and focused on the last 5 years.
Regenerative medicine is made up of a number of techniques some related and some not
so, and it is some of these specific techniques rather than regenerative medicine as a whole
which stimulates public opinion. For example stem cell research and cloning are both
techniques which are more known by the general public than the overarching genre of
regenerative medicine.
3
The Select Committee on Science and Technology; Inquiry on Regenerative Medicine; January 2013.
3
Public views on regenerative medicine
Sources of Data
The main sources of data are summarised below:

Sciencewise Supported Dialogue: This was a large Sciencewise supported
dialogue focussed on stem cell research and published in 20084 in which there was
an extensive engagement where 49 stakeholder interviews were carried out with
specialists in the field, and 200 members of the public were engaged in a series of
workshops.

Eurobarometer – Biotechnology Report – January 2010: Another extensive
source of information was a European poll5 which surveyed awareness of
regenerative medicine. The survey was conducted over 27 European countries with
26,671 interviews carried out including 1311 in the UK.

Europeans and Biotechnology – Winds of change: The European Commission
6
published a follow up opinion poll in 2010 , the total sample size for this poll was
26,676 across Europe with numbers per country being based on country size, but in
most cases this is not broken down into individual European countries. The poll
considered synthetic biology, human enhancement, xenotransplantation, gene
therapy, embryonic stem cell research, and non-embryonic stem cell research.

International Survey Centre: This was a survey carried out on US attitudes to
human embryonic stem cell research involving around 2300 participants7.
Public Attitudes to Science 2014: This study looked at attitudes to science,
scientists and science policy among the UK public. The study was conducted by
Ipsos MORI in partnership with the British Science Association, on behalf of the
Department for Business, Innovation and Skills, and the Economic and Social
Research Council. It used a representative survey of 1749 adults (aged 16+) plus a
booster survey of 315 16-24 year olds; face to face qualitative research; and on-line
qualitative research and social listening.8
Understanding Public Opinion in Debates over Biomedical Research: Looking
beyond Political Partisanship to Focus on Beliefs about Science and Society:
This study analyses US survey data collected between 2002 and 2010 on embryonic
stem cell research in terms of socio-economic groups and political alignment9.


4
BMRB Report: 45106748 Stem cells public dialogue.
Eurobarometer 73.1: Biotechnology Report, Jan 2010 – Feb 2010. Section 2.5.
Europeans and Biotechnology in 2010. ‘Winds of Change’. October 2010. EUR 24537 EN. Section 4, Regenerative
Medicine.
7
Nat. Biotechnol. 29, 484–488 (2011), US attitudes toward human embryonic stem cell research, M D R Evans & Jonathan
Kelley.
8
Public Attitude to Science 2014: Main Report, march 2014, Ipsos MORI Social Research Institiute.
9 Understanding Public Opinion in Debates over Biomedical Research: Looking beyond Political Partisanship to Focus on
Beliefs about Science and Society. Matthew Nisbet and Ezra M Markowitz, www.plosone.org. February 14, Volume 9, issue 2,
e88473.
5
6
4
Public views on regenerative medicine
Summary of views
The above research can be summarised under a number of headings as listed below:
Regenerative medicine: There is widespread conditional support for regenerative medicine
in the UK with up to 64% approval rates4,5. However if only rich people were to benefit then
69% of UK respondents would not support regenerative medicine5. Similarly support dropped
if only a few would benefits (53%) and also if we were putting future generations at risk
(30%) 5. Should ethical and scientific viewpoints on regenerative medicine differ, 40% of UK
respondents thought that the scientific viewpoint should prevail while 48% disagreed.
Stem cell research: There is also widespread though conditional support for stem cell
research and therapies, but support is related to the sources of stem cells, the purposes of
research and the clinical risks in treatments. In the UK, 57% of the adults surveyed thought
that the benefits of stem cell research outweighed the risks, while for adults who said they
felt informed about the area the figure was higher at 76%8. There were ethical and social
concerns related to both tissue-specific stem cells (TS cells) and embryonic stem cells (ES
cells)4.
The UK was viewed as relatively sophisticated in stem cell regulation compared to most
European countries. The consultative approach to embryonic stem cell regulations in the
UK, both with Parliamentarians and public engagement has supported and built trust in
governance, though there were notable exceptions to this view from Church and pro-life
groups4.
Embryonic stem cell research: There are ethical and social concerns relating to embryonic
stem cell research. A majority of Europeans approve embryonic stem cell research but most
want strict regulation. For UK respondents 15% gave approval without the need for
regulation but a further 61% approved providing there was strict regulation5. The
consultative approach in the UK to developing embryonic stem cell regulations is in general
approved of4. Much of the research carried out relates to this area and the main findings are
summarised below4,5,6:
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

32% believe it is ethically wrong to use human embryos in medical research
even if it might offer promising new medical treatments, while 59% disagree
and 9% have no opinion. Across Europe the UK had the second lowest level
of agreement, and only a third of atheists consider using human embryos in
medical research as ethically wrong, compared to 48% of those who believe
in God.
With regard to the question on do we have a duty to allow research that might
lead to important new treatments, even when it involves the creation or use of
human embryos; 58% of UK respondents agree with this statement, while
36% disagreed. Across Europe the UK had the third highest level of
agreement.
The majority of surveyed Europeans (56%) believe that, immediately after
fertilisation, the human embryo can already be considered a human being,
5
Public views on regenerative medicine
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

although public opinion differed strongly across the surveyed countries. The
UK had one of the lowest levels of agreement with this view at 45%. Across
Europe, gender has an influence with 52% of men compared to 60% of
women agreeing. Education also matters, with 60% of those who left full-time
education aged 15 or younger agreeing, compared to 50% of those who
stayed in school until age 20 or older. Religion has the strongest impact: 63%
of those who believe in God agree compared to 42% of atheists.
Further research looked more deeply at human embryonic stem cell research
and the changes in approval between 2005 and 2010. Across Europe overall
approval rates declined slightly between 2005 and 2010. However the overall
figure hides a significant decline of around 8% in support in several countries
which is offset by increases in approval in other countries. In the UK, which
had the highest rate of approval, approval rates increased by around 8%6.
The use of embryonic stem cells was accepted by the majority of respondents
for the treatment of heart attacks and to cure cancer, but acceptance was less
(43%) for the treatment of allergies.
A US study analysed support for embryonic stem cell research in terms of
political alignment and four categories of respondents which were Scientific
Optimists, Scientific pessimists, Conflicted, and Disengaged. Aggregated
data from 8 surveys showed that 74% of Scientific Optimists either strongly
favour or favour embryonic stem cell research, while for Pessimists the figure
was 39%, for Conflicted the figure was 53%, and for disengaged the figure
was 59%. The study also showed distinct differences between participants
who supported different political parties. Overall, the support for embryonic
stem cell research has increased from around 40% in 2002 to around 60% in
20109.
Adult stem cells: Adult stem cells (AS cells) are the least controversial source of stem
cells, having proven clinical applications4. In one study, 18% of the UK respondents give
approval without the need for regulation, and a further 63% approve the research providing
there is strict regulation.
Cosmetic and Human Enhancement: Use of regenerative techniques to rejuvenate
appearance received low levels of acceptance (27% to 29%)5.
Gene Therapy: Gene therapy is approved by a strong majority of Europeans and 73% of UK
respondents approve, but mostly if it is strictly regulated5.
Cloning in Human and animals: Animal cloning, for endangered species and for dairy
livestock, has a higher level of acceptance at 42% than human cloning, with only 11%
accepting the cloning of a child who had died and 10% accepting self cloning7.
Transgenic techniques: With regard to transgenic animal research, 64% of UK respondents
approve either with or without strict regulation.5
6
Public views on regenerative medicine
6
General Ethics: The European Commission , mapped the sanctity of human life versus
utilitarian positions. This demonstrates the wide variation in opinion across Europe. A group
of mainly Scandinavian countries but also including the UK and Spain tend towards support
for research, but there are group of countries including Cyprus, Slovenia, Turkey, Austria,
Germany and Croatia which tend to believe that embryonic stem cell research is morally
wrong.
Figure 1 - research carried out by the European Commission6, mapping the sanctity of human life versus
utilitarian positions.
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Public views on regenerative medicine
4 Public views presented in media
In the media, there are some references and fears about stem cell tourism where potential
recipients travel to less well regulated countries to receive treatment or enhancements. A
story carried by the BBC (January11th 2014) said that professional athletes have been
contacting doctors and scientists who specialise in gene therapy with the aim of performance
enhancement. Such treatment if successful would be almost impossible to detect.
NHS choices carried out a review of media reporting10. The review looks back at the main
stories about stem cells covered by ’behind the headlines’ since 2007. It gives an overview of
the stories and how they were reported in the news, and looks at progress over this time.
‘Behind the Headlines’ provides an unbiased and evidence-based analysis of health stories
that make the news. It examines two popular health stories from the national media every
day, and looks at whether media claims match the research, as well as the strengths and
weaknesses of the scientific studies themselves.
They report that newspapers’ stem cell headlines have shown an overwhelmingly positive
attitude towards stem cell research. The pioneering nature of this type of research shines
through in headlines commonly featuring words like “breakthrough” and “first”. “Hope” and
“cure”, “treatment” and “transplant” also commonly appear.
However, the study found that newspaper stories tended to be overly optimistic in terms of
timescales and results.
Looking at social media there are a number of discussion fora, including two within LinkedIn
which tend to be populated by professionals within the area and in the main tend to discuss
specific technical issues on regenerative medicines.
10
Hope and hype, An analysis of stem cells in the media. A Behind the Headlines special report. NHS Choices.
November 2011
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Public views on regenerative medicine
5 Analysis of views and gap
analysis
The general public view regenerative medicine favourably, but there are issues around use
of embryonic stem cells, transgenic research, and the use of cloning to grow replacement
organs. Use of adult stem cells is supported to a higher degree than embryonic stem cells.
There are also public fears that treatments will be available ‘for those who can afford it’ that
there will be health tourism, and that resources will be diverted to develop cosmetic and
methods for physical enhancement. .
When compared to other countries the UK public opinion tends to be the most supportive of
scientific arguments but there is still substantial ethical concerns, and there is a belief that
the regulatory regime is a guardian against bad practice.
One issue appears to be lack of information on specific topics within regenerative medicine:
with only 34% feeling informed about stem cell research although 90% had heard of the
subject; 54% feeling informed about animal research; and 8% feeling informed about
synthetic biology with 61% having heard about the subject8.
Overall, the general public and media within the UK are generally supportive of regenerative
medicine, providing that the area is well regulated. This support seems to be slowly
growing6, and the low levels of “don’t knows” on the survey data suggests that the public are
well informed in this area. The media tends to be over optimistic on timescales and the
potential for regenerative medicine and it is possible that this will lead to some sort of public
backlash in the future as predictions are not fully achieved.
A US study9 showed that public opinion is segmented into different groups and this is also
reflected in the PAS 2014 review8. Therefore engagement and the informing of each
segment may need different approaches.
Stem cells are a significant component of regenerative medicine and the public dialogue
carried out in 2008 was a comprehensive engagement activity that increased considerably
the understanding of what is public opinion on this component
Given the pace of technological development there is always likely to be a time lag between
aspects of these developments where the views and values of the public are currently
unknown. Also given the amount of media coverage in general, public views are likely to
evolve quickly.
To date the majority of the work to identify the views of the public in this area has been
looking at regenerative medicine as a future technology which has the potential to lead to
significant health benefits. As the technology develops the focus will shift towards more
specific applications, and it is likely that there will be gaps in understanding of the views of
the public on these more specific applications.
This research has identified the breadth of technology covered under the heading
regenerative medicine. As a result this paper has focussed on evidence on public views
relevant across the topic. It is recognised that much further detail exists within specific areas
of the technology, and future updates will be needed to extend the amount of evidence
covered and look at specific aspects of regenerative medicine.
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Public views on regenerative medicine
Appendix 1 Definition of techniques involved in
regenerative medicine
The term regenerative medicine covers a range of medical techniques. The following table
provides definitions for some of the major techniques and terms used in this area.
Technique
Description
Synthetic biology
Is the design and construction of biological
devices and systems for useful purposes,
such as to combat disease. It is an area
of biological research that
combines biology and engineering.
Human enhancement
Is any attempt to temporarily or permanently
overcome the current limitations of the
human body by natural or artificial means. In
this case, it is the use of regenerative
medicine techniques to alter human
characteristics and capacities,
Xenotransplantation
Is the transplantation of living cells tissues, or
organs from one species to another.
Gene therapy
Is the use of DNA to treat disease by
delivering therapeutic DNA into a patient's
cells. The most common form of gene
therapy involves using DNA that encodes a
functional, therapeutic gene to replace
a mutated gene.
Stem cell research
Uses stem cells to grow replacement organs
or tissues within the human body. Stem cell
research can use embryonic stem cells or
adult stem cells.
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Public views on regenerative medicine
Appendix 2: summary of sources of information
Title
Type*
Produced/delivered
by
date
Public Attitudes to
Science 2014.
Public
Consultation/market
Survey
Ipsos MORI, Social
Research Institute
Mar
Survey of 2064 UK Adults. Face to face qualitative research. On2014 line qualitative research and social listening.
Understanding
Public Opinion in
Debates over
Biomedical
Research: Looking
beyond Political
Partisanship to
Focus on Beliefs
about Science and
Society
The Select
Committee on
Science and
Technology; Inquiry
on Regenerative
Medicine
US Attitudes toward
human embryonic
stem cell research.
Nat. Biotechnol.
29,484-488 (2011),
MDR Evans &
Jonathan Kelley
Review and analysis
Matthew Nisbet &
Ezra M Markowitz
Feb Review of data and analysis of trends.
2014
Select
enquiry.
Survey
committee House of Lords, the
Select Committee on
Science and
Technology.
Outline
Jan
Inquiry involved 3 experts in the field of regenerative medicine.
2013
International Survey 2011 USA based 2295 participants
Centre USA
11
Public views on regenerative medicine
Hope and hype; An
Review of
analysis of stem
Reporting
cells in the media; A
Behind the
Headlines special
report; NHS Choices
Media NHS Choices
Nov Review of media reporting from 2007 to 2011.
2011
Eurobarometer 73.1: Market Research
Biotechnology
Report, Jan 2010 –
Feb 2010. Section
2.5
TNS
Opinion
Social.
& Oct
The survey was conducted over 27 European countries with 26,671
2010 interviews carried out including 1311 in the UK.
Europeans and
Biotechnology in
2010. ‘Winds of
Change’. October
2010. EUR 24537
EN. Section 4,
Regenerative
Medicine.
Market Research
European
Commission/Europe
an Research Area
Oct
Total sample size was 26,676 across 32 countries. Numbers per
2010 country based on population size. Face to face interviews.
Stem cells public
dialogue BMRB
Report: 45106748
Public Consultation
British Market
Research Bureau
(BMRB)
2008 49 stakeholders were interviewed. 200 members of the public were
engaged at a series of workshops.
Taking Stock of
Regenerative
Medicine in the
United Kingdom
Review of activity in BIS: Department for
Regenerative
Business Innovation
Medicine
and Skills; Offices
for Life Sciences
Initiated by the Biotechnology and Biological Sciences Research
Council (BBSRC) and the Medical Research Council (MRC), and
funded by the Department of Innovation, University and Skills’
Sciencewise programme.
July Informed by a series of workshops in London, Edinburgh and
2011 Leeds, as well as a call for evidence open to regenerative
medicine stakeholders, and supported by key quantitative data,
12