APPENDIX 3
VISIT TO THE UNITED STATES OF AMERICA
17-22 OCTOBER 1999
Note by the Chairman
1. I and four other members of the Sub-Committee,
and our Specialist Assistant, visited the USA for five days in
October 1999. The programme of meetings in Washington D.C. and
Boston was arranged to give the visitors a sense of how the issues
we had discussed in the United Kingdom were handled in the USA.
We were particularly interested to see if the reputed positive
public attitudes to science in the USA were a reality, and if
so whether there were different US institutions and practices
that were responsible for creating such support.
2. My companions were Lord Haskel, Lord Kirkwood,
Lord Tombs, Baroness Wilcox, and Dr Adam Heathfield. We count
ourselves extremely fortunate in having met so many informative
and interesting people in the USA, and are extremely grateful
to all those who set aside time to see us and who were involved
in making preparations for our visit. We wish particularly to
place on record our thanks for the hospitality and assistance
we received from HE Sir Christopher Meyer KCMG, British Ambassador
in Washington, Mr George Fergusson, HM Consul-General in Boston,
and their staffs, notably Miss Philippa Rogers and Mr Simon Sherrington
who accompanied us on our travels in Washington and Boston respectively.
3. This note is a summary of the main points brought
to the visiting party's attention during our time in the USA.
The text in italics represents our comments on information received
in each of the meetings; that in plain text is either background
information or observations made to us by our hosts.
4. The cost of the visit was approximately £26,000.
MONDAY
18TH
OCTOBER,
WASHINGTON.
White House Office of Science and Technology Policy
- Dr Neal Lane, President's Science Advisor
- Dr Arthur Bienenstock, Associate Director for
Science
5. The Office of Science and Technology Policy (OSTP)
was created in 1976 to provide the President with science advice
and to co-ordinate research and development programmes of the
Federal government. The OSTP forms part of the executive office
of the President (similar to when the OST was part of the Cabinet
Office in the United Kingdom) and its head, Dr Neal Lane, is the
USA's equivalent to the Chief Scientific Adviser.
6. Dr Lane has spoken of the need for "civic
scientists" who communicate risks and benefits clearly to
the public and respond to their concerns. He has expressed the
view that scientists have a responsibility to work with the media,
civic organisations and other outreach mechanisms to make sure
consumers have the information needed to make informed decisions.
7. Public attitudes to science were seen as being
increasingly important. Public opinion and lobbying were influential
in setting the budget allocation for science, and public confidence
in the scientific basis of regulations was essential for the operation
of US regulatory agencies.
8. The supervisory system for food safety was open
to public scrutiny, and this created public trust in the regulatory
agencies and had been a significant factor in the lack of public
concern over GM food. The Freedom of Information Act was important
in ensuring openness.
9. The meeting at the OSTP provided a very useful
overview of the relationship between science and society in the
USA. Attitudes to science in the USA appeared to be more favourable
than in the United Kingdom, but the current level of public support
could not be taken for granted.
American Association for the Advancement of Science
(AAASoften referred to as "triple-A-S")
- Dr Mark Frankel, Director, Scientific Freedom,
Responsibility and Law Program
- Joanne Carney, Director, Science & Technology
and Congress
- Nan Broadbent, Director, Office of News and Information
10. The AAAS is the main body in America responsible
for promoting public understanding of science. It supports a number
of programmes focussed on areas where science, society and government
intersect, and has organised a number of public forums on sensitive
scientific issues including cloning, GMOs and stem cell research.
The AAAS publishes Science magazine, amongst other titles,
which provides an important source of income. It also organises
EurekAlert!an internet resource of science stories for
journalists (the nearest United Kingdom equivalent is the recently-created
AlphaGalileo site).
11. A dialogue between the science community and
the general public was required to enable the public's needs and
values to be understood by the science community, and for them
to be included in decision making. However, many in the US science
community had not yet "bought into" the concept of a
public dialogue. Furthermore, it was not clear what methods of
public participation would work best in the USA.
12. Science promotion and promoting debate about
science were not the same, and the AAAS was not an organisation
attempting to advance science at all costs. There was a tacit
"contract of consent" for scientists, and the public
should be able to place some limitations on what the scientific
community did.
13. The meeting with the AAAS had many similarities
with evidence we had received in the United Kingdom. The descriptions
of the relationship between science and society and the language
used were very familiar. The overall impression was of an organisation
attempting to encourage the scientific community to catch up with
its changing social context.
National Academy of Sciences (NAS)
- Donna Geradi Riordan, Director, Office on Public
Understanding of Science
- Susan Turner-Lowe, Director, News and Public
Information Office
- John Campbell, Associate Executive Director,
International Affairs Office
- Dr Warren Muir, Executive Director, Commission
on Life Sciences
- Dr Charles Evans, Senior Advisor for Biomedical
and Clinical Research
- Dr Jennifer Kuzma, Program Officer, Board on
Biology
14. The NAS incorporates the National Research Council,
the National Academy of Engineering, and the Institute of Medicine
(these organisations are referred to as the National Academies).
The National Academies provide science advice to Congress and
the White House, but operate outside the framework of government,
assembling committees of experts to produce reports.
15. The flagship project of the NAS's Office of Public
Understanding of Science (OPUS) is "Beyond Discovery",
a series of publications which traces the development of well-known
scientific inventions, showing how their origins are in curiosity-driven
research, often in areas far removed from their current application.
The project was initiated to redress a perceived lack of understanding
(within Congress and more generally) of the importance of undirected,
as well as directed, research.
16. There is greater public trust in the regulators
in the US than in the United Kingdom. Trust was promoted by the
clear demarcation between the regulator and those regulated (a
situation which the United Kingdom may be said to be moving towards
of late), and openness as ensured by the Freedom of Information
Act (FOIA), the Federal Advisory Committees Act (FACAwhich
ensures openness in the procedures of federal committees) and
right-to-know laws, which require agencies actively to put information
into the public domain.
17. The FACA has recently been applied to the expert
committees of the National Academies that provide advice to government.
An exemption was introduced that enables their deliberative meetings
to continue to be held in private. Private deliberations help
prevent pressure being applied by government or single issue groups,
but the long-term trend to openness may result in deliberative
meetings having to be public.
18. The meeting highlighted the difficulties created
when a long-standing, reputable scientific organisation has to
come to terms with pressure for openness and public scrutiny.
Is it possible to combine free discussion during deliberations
with freedom of access for outside organisations, including activist
groups and government? This appeared to be an unresolved problem
in the USA.
TUESDAY
19TH
OCTOBER,
WASHINGTON
National Institutes of Health (NIH)
- Anne Thomas, Associate Director for Communications
and Secretary to the Council of Public Representatives
19. The NIH is one of eight health agencies in the
Public Health Service, which in turn is part of the US Department
of Health and Human Sciences. The NIH is a research organisation;
its budget for 1999 was over $15.6 billion. Following a report
by the Institute of Medicine in 1998 which recommended that the
NIH have greater public participation in setting its research
priorities, the NIH set up the Council of Public Representatives
(COPR) which held its first meeting in April 1999.
20. The main function of the COPR is to bring public
views to the debate on NIH funding priorities. The 20 COPR members
(chosen from a group nominated by the various institutes of the
NIH) ought not to represent particular interest groups, diseases
or patient populations.
21. The COPR is a fully chartered Federal Advisory
Committee, and under FACA regulations, all its meetings are held
in public. It meets twice a year, and its members are paid an
honorarium of $150/day plus travel and subsistence costs.
22. We learnt that funding for health research
in the USA is increasing rapidly, mainly as a result of public
lobbying through Congress. Public involvement in securing federal
money for the NIH seems to have led naturally to expectations
of being involved in setting priorities for its expenditure. As
an attempt to increase public involvement, the COPR is still in
its experimental stages, and it is not yet clear how much influence
it will either demand or be allowed.
Meeting on Risk
- Barry Beringer, Chief Counsel, House Committee
on Science
- Mike Rodemeyer, Democrat Legislative Director,
House Committee on Science.
23. Barry Beringer and Mike Rodemeyer were both involved
in the establishment of the Society of Risk Analysis.
24. The difficulty of communicating risk was a problem
common to both the US and the United Kingdom. There was much debate
in Congress on how federal agencies should address risk assessment.
However, openness and transparency regarding the reasoning and
assumptions used were important, especially when the available
scientific knowledge was uncertain.
25. Under legislation passed in 1998 (the Shelby
Amendment to the Appropriations Bill) the results of government-funded
research now have to be made available to the public. This includes
research to support risk assessment and regulations. There had
been some debate on whether or not to standardise the risk assessment
procedures used by different regulatory agencies.
26. Risk assessments were moving away from single
numerical results; ranges and discussions of possibilities were
becoming more common. Using comparative risks to communicate with
the public could be successful, but finding convincing comparisons
was rare.
27. Informative labelling of food products gave consumers
more control over which risks they took, but industry and regulatory
agencies were reluctant to adopt labelling on the basis of public
concern rather than proven risk.
28. When discussing the role of the media in debates
on risk and science, it was observed that the media had an increasing
propensity to report on individual research papers without waiting
for a scientific consensus to start to form. This practice led
to increasing portrayal of "duelling scientists" in
the media.
29. This meeting confirmed our growing impression
of the importance of openness and transparency in the regulatory
process.
Ambassador's lunch
Over lunch at the Ambassador's residence, we
met, among others:
- Dr Laura Garwin, North American Editor, Nature
- Rick Weiss, Washington Post
- Dr Al Teich, Director of Science Policy, AAAS
30. During the discussion, Dr Garwin expressed the
opinion that the public in the US was more naturally accepting
of new technologies than in the United Kingdom. Emotion (and not
just rational analysis) influenced attitudes to technological
development, and was important in creating this difference between
the two countries.
31. Rick Weiss said that the increase in corporate
science was making some US scientists less keen to talk to the
press, largely because of concerns over confidentiality. He added
that when corporate scientists did talk to the press, their motivation
tended to be promotional, not educational.
32. Dr Teich said that the public had made the link
between science research and end products; now, when people heard
about research, they wanted to hear how it would impact on their
lives. Consequently, they also wanted to hear about how they could
influence the research that would end up affecting them.
Afternoon meetings about GMOs
33. The different public reactions to GM food in
the US and the United Kingdom were a recurring theme of our visit.
Our visit coincided with some major changes in the US debate on
GM food, notably the decision by the Food and Drug Administration
to hold a series of public meetings on the subject. This followed
soon after Monsanto had admitted to a public relations disaster
over GM crops, and a major agricultural merchanting and food processing
company, Archer Daniel Midland, had asked its suppliers to segregate
GM from non-GM produce.
(i) Greenpeace, Friends of the Earth, and
the Worldwatch Institute
- Peter Morris, Greenpeace
- Sarah Newport, Friends of the Earth
- Brian Halweil, Worldwatch Institute
34. The meeting with Greenpeace, Friends of the Earth
and the Worldwatch Institute was organised to investigate the
different role of NGOs in generating, or not generating, a debate
on GMOs either side of the Atlantic.
35. Greenpeace and Friends of the Earth have a lower
profile and less influence in the USA than they do in the United
Kingdom. However, both have been involved in anti-GM campaigning,
most notably Friends of the Earth's campaign to get food processors
to say how much GM produce they use. The Worldwatch Institute
is a US-based non-profit policy research organisation which provides
public information on environmental issues.
36. Resource limitations meant that Greenpeace and
Friends of the Earth in the US could not campaign on all the issues
they wanted. Until recently Greenpeace had given priority to climate
change.
37. Food safety concerns had focussed on pesticides,
rather than GM ingredients, and it was only stories about harmful
effects on monarch butterflies that had raised media coverage
of the GM crop issue.
38. There were different attitudes to the precautionary
principle in the USA and Europe. In the US evidence of harmful
effects was required before restrictions were put in place, whereas
in the EU, there was a general presumption that a new technology
needed to be shown to be safe before it could be adopted.
39. Although many of our other hosts attributed
the lack of controversy over GMOs to public trust in regulators,
the NGOs felt it was more to do with general ignorance of GM technology
and its use in food production. It is difficult to choose between
these interpretations; indeed they may well overlap since trust
in regulatory structures may create public acquiescence over the
issues. However, almost every indication we received on our visit
was that a widespread debate on GMOs was beginning in the US,
during which the extent of public trust should become more clear.
(ii) Environmental Protection Agency (EPA)
- Marcia Mulkey, Director, Pesticides Programme
Office
- Elizabeth Milewski, Senior Biotechnology Advisor,
Office of Prevention, Pesticides and Toxic Substances
40. There are three agencies that each regulate different
aspects of GM crops in the US: the Food and Drug Administration
(food safety), the Environmental Protection Agency (pesticides,
herbicides and environmental quality), and the US Department of
Agriculture (horizontal transfer of genetic material). This
divided responsibility is not helpful to confidence in the overall
regulatory process.
41. The Environmental Protection Agency (EPA) has
regulatory authority for crops that have been genetically modified
to produce their own pesticides or to be herbicide resistant (i.e.
those crops that will change patterns of pesticide and herbicide
use). The EPA regulates environmental exposure to these crops
to ensure that there are no adverse effects to the environment
or to any beneficial, non-targeted insects and other organisms
(e.g. the monarch butterfly).
42. Increasingly articulate criticism of the EPA
from outside meant that in addition to creating regulations that
protected people, they now needed to explain the basis of their
decisions. They appeared undaunted by the idea of more communication,
but were very honest about the practical difficulties involved,
especially (i) the need to change the culture throughout the organisation,
rather than dumping responsibility on a small "communications
group", (ii) the difficulty of getting political support
for extra money for communication since it was seen as PR activity
for the agency, and (iii) the scarcity of people who are good
at communicating complex information to a wide audience.
43. Implementing the Freedom of Information Act (FOIA)
was valuable but took up a large amount of staff time. Most of
the work involved handling requests and processing documentation.
WEDNESDAY
20TH
OCTOBER,
WASHINGTON
National Science Foundation (NSF)
- Dr Bennett Bertenthal, Assistant Director, Directorate
of Social, Behavioural and Economic Sciences
- Dr William Bainbridge, Science Advisor, Directorate
of Social, Behavioural and Economic Sciences
- Dr Daniel Newlon, Program Director, Directorate
of Social Behaviour and Economic Sciences
- Dr George Strawn, Executive Officer, Directorate
for Computer and Information Sciences and Engineering
- Dr Craig Reynolds, Program Director, Directorate
of Computer and Information Sciences and Engineering
- Dr Susan Iacono, Program Director, Directorate
of Computer and Information Sciences and Engineering
- Jennifer Bond, Program Director, Division of
Science Resource Studies
- Bill Noxon, Media Relations and Public Information,
Office of Legislative and Public Affairs
- Melissa Pollock, Science and Engineering Indicators
- Rose Gombay, Program Manager, Division of International
Programs
44. The NSF funds research and education in science
and engineering (including some social science) through grants,
contracts and co-operative agreements. Its budget in 1998 was
$3.4 billionabout 20 per cent of the federal support
to academic institutions for basic research.
45. Through its Social, Behavioural, and Economic
Sciences Directorate, the NSF compiles the main US source of data
on science and technology. The NSF's Office of Legislative and
Public Affairs runs an "Outreach" programme. This includes
a National Science and Technology Week, and projects in public
education and formation of partnerships with government and media
organisations.
46. An interesting point emerged from the preliminary
results of the 1999 survey of public understanding and attitudes
to science. Two groups were shown as feeling that the harm of
genetic engineering might be outweighing its benefits: people
who were college educated, and those with high interest in health
issues.
47. The NSF are attempting to come to terms with
the "new age of accountability" for science and Neal
Lane's idea of "civic scientists". However, they are
concerned about changes that might impinge on the primacy of peer
review or reduce federal support for fundamental, as opposed to
applied, science research. It was not clear what methods they
thought would provide appropriate public involvement.
48. In the background to the debate on public
involvement are concerns that public and Congressional support
for science is becoming unbalanced in favour of health. Medical
research has a more immediate relationship with the public than
physical science research and may win any "popularity contest".
A lot of the work on engaging the public seems directed at securing
support for more money. In 1999-2000 US federal expenditure on
R&D rose by 15 per cent for the NIH and only 6.6 per cent
for the NSF.
Lunch to discuss access to information technology
in the US"the digital divide"
- Larry Irving, Director, National Telecommunications
& Information Administration
- Tom Kalil, National Economic Council
- Lori Perine, Senior Policy Advisor, Computing,
Information and Communications, National Science and Technology
Council
49. Although the IT revolution is having a major
impact on the US economy, many people are being left behind. The
US government was looking at ways to stop the gap between IT "haves"
and "have nots" from widening still further. Some problems,
such those faced by people without English as their first language,
may be solved by technical developments in the near future. Other
barriers to wider IT use, such as cost or lack of familiarity
and training, were not so easy to overcome by technical advances
alone.
50. Initiatives by the US government included the
establishment of community technology centres (CTCs) in lower
income areas; a programme to provide funds for the design of systems
for people with disabilities; a federal initiative to provide
internet links for all schools; and the E-rate (education rate),
an initiative to provide Internet access at discounts of between
20 and 90 per cent to schools in lower income areas.
50. It is clear that the US faces the same problems
as the United Kingdom in this field. No doubt those concerned
in the United Kingdom Government will wish to keep in touch with
the US initiatives designed to alleviate the problems identified.
Meeting with Congressman James Sensenbrenner (Republican,
Wisconsin), Chairman, House Committee on Science
51. The brief meeting was most memorable for a lively
exchange on the subject of GM food. Congressman Sensenbrenner
forcibly expressed his view that the EU rejection of GM food was
an example of trade protectionism. The visitors equally forcibly
refuted his suggestion, stating that the issue of unsegregated
crops, the lack of labelling and the consequent diminution of
consumer choice were the most important factors.
52. Congressman Sensenbrenner believed this was a
good time for science in the USA. The previous 20 years of research
work were regarded by the US public as being responsible for the
current US economic boom. Public perceptions of the value of science
had made possible the increases in the science budget over the
last 5 years.
53. The meeting was chiefly valuable for exposing
the visiting Committee members to some of the political pressures
on Congress regarding scientific issues.
THURSDAY
21ST
OCTOBER,
BOSTON
Boston Museum of Science
- David Ellis, President and Director of the Museum
- Cary Sneider, Head of Programs Division
- Caroline Alpert, Current Science and Technology
Project Manager
54. The Museum of Science has more than 1.7 million
visitors each year (making it the most-attended cultural attraction
in Boston). The Museum is an independent, non-profit organisation
with an annual budget of $25.5 million, 90 per cent of which comes
from private sector income. The museum has over 600 hands-on exhibits,
and a staff of "scientific interpreters".
55. As part of a project to teach aspects of the
scientific process, the Museum is trying to illustrate (i) science
as creative as well as deductive, and (ii) knowledge as an evolving
quantity. Such ideas could indicate that scientists see truth
as relative"my truth is as good as yours". To
guard against this it is necessary to emphasise the extent of
scientific consensus, and to point out where maverick voices stand
in relation to the majority view.
56. The Museum's "Current Science and Technology"
project aims to make the Museum a place for the public to turn
to for information about highly topical science issues. Exhibits
normally take 3-5 years to develop, so different methods
are needed to get up-to-the-minute science reflected in the Museum.
57. According to David Ellis, the hardest aspects
of science to communicate to the public were risk and scale.
58. The Museum of Science is clearly well liked
and respected in Boston, a city where science and technology have
a high profile and are given credit for the economic revival.
The issues which the Museum is attempting to address will be familiar
to many similar organisations in the United Kingdom: balancing
education with entertainment, attracting commercial sponsorship
whilst maintaining independence, evaluating the effects and popularity
of its exhibits, and keeping the content topical.
Meeting at the Kennedy School of Government
- Professor Sheila Jasanoff, Science and Public
Policy Program
- Professor John Holdren, Director, Science and
Public Policy Program
- Arthur Daemmrich, Science and Public Policy Program
- Professor William Clark, Environment and Natural
Resources Program
- Professor Michael Baram, Director, Centre for
Law and Technology, Boston University
- Dr Martin Teitel, Executive Director, Council
for Responsible Genetics
59. The Kennedy School of Government has its origins
in Harvard University's Graduate School of Public Administration
(established 1936). The School encompasses 10 research centres
and institutes and has more than 800 students. Areas of particular
research interest at the Kennedy School's Science, Technology
and Public Policy Program include legal, political, and cultural
studies of science and technology; science and technology policy
processes; and work on nuclear energy, climate change, information
technology, and sustainability.
60. The Council for Responsible Genetics is a citizens'
organisation founded in 1981 to foster public debate about the
social, ethical and environmental impacts of new genetics technologies.
61. The meeting provided the visiting party with
a description of the many different ways the public could interact
with science policy in the USA. Many of our other hosts had referred
to "openness", and this meeting gave a picture of what
this meant in practice. Where science is carried out in support
of general public objectives (e.g. setting environmental standards),
the public can have a direct role through the administrative hearings
while policies are formulated, and judicial review after policies
are announced. The FACA and FOIA help the public (often as represented
by activist organisations) participate in these processes. For
decisions about which parts of science to fund, public participation
occurs through lobbying Congress and through oversight of funding
organisations.
62. Trust in regulatory agencies was discussed at
length. Government responses to public mistrust in the 1960s had
created the current structure of the agencies, and had led to
the Freedom of Information Act (1966), the Federal Advisory Committees
Act (1972), and the Government in the Sunshine Act (1976). Regulators
in the US were not trusted to be error free, but rather were thought
to have a useful role in protecting the public. Openness meant
pressure groups were able to scrutinise the detailed aspects of
the regulators' work, and legal redress for errors was available.
Thus, the regulators fitted into a framework of different institutions
that, when viewed as a whole, built public trust.
63. The role of the US legal system was clearly important.
It provided various opportunities for the public to influence
science, particularly when government permits or standards were
being subjected to judicial review, or when tort laws were invoked
to provide compensatory or punitive damages.
64. Several key points emerged:
- Opportunities for individuals to take cases to
court at low cost were increased by contingency fees; and class
actions offered remedies for groups not in a position to sue as
individuals.
- Legal routes were available to companies as well
as individuals. Monsanto had used litigation to prevent labelling
on milk from cows treated with the hormone bovine somatotrophin
(BST).
- Although the legal process did not directly affect
basic research and development, organisations were aware of the
prospect of court actions, and were careful to do work in such
a way that legal problems would be avoided in the future.
- Confidence of future redress being available
through the courts made the public less resistant to science and
technology developments.
65. It was clear that individual institutions,
legislation or practices that contributed to the culture of openness
in the US should not be considered in isolation; attempts to transfer
particular aspects of the US process to the United Kingdom would
be unwise.
Boston Globe
- Doug Bailey, Health and Science Editor
- Judy Foreman, Leah Garnett, Karen Hsu, Steve
Reucroft, Richard Saltus, John Swain, and John Yemma (all journalists
at the Boston Globe)
66. The Boston Globe is a broadsheet newspaper.
In addition to its general coverage of science, the Globe produces
a weekly Science and Health section. The Boston area has a large
number of high-tech companies and research institutions, and the
level of interest in science among its readers tends to be high.
67. The roles of newspapers in the United Kingdom
and the US have significant differences. Readership in the US
is falling, in contrast to the United Kingdom where interest in
all forms of reading, especially newspapers, is remarkably high.
The United Kingdom's press is dominated by a small number of national
newspapers, many of which take strong editorial lines on stories,
and all of which are very aware of what the others are covering.
In this situation, a single article can create a response which
stimulates more and more coverage, a "snowball" effect.
In the US, there are few national newspapers, and these tend not
to dominate a media culture characterised by extreme diversity.
The writing tends to have less of an editorial slant, and so "snowballing"
stories or serieses of campaigning articles are far less common.
68. The Globe journalists felt that in the
US there was a greater requirement to "show your working"
in an articleany sensational assertions needed to be backed
up and put into context with views from other sources. However,
problems of headlines being written by sub-editors and failing
to reflect the content of a story were common to both countries.
69. Although the Committee had heard repeatedly
in the United Kingdom about how much better press access to scientists
was in the US than in the United Kingdom, this feeling did not
come across strongly in our meeting with the Globe.
Consul General's Dinner
70. Over dinner at the Consul General's residence,
we met:
- Professor Jeremy Knowles CBE, Dean, Faculty of
Arts and Sciences, Harvard University
- Dr Alison Taunton-Rigby, President and CEO, Aquila
Biopharmaceuticals
- Dr Richard Roberts, Research Director, New England
Biolabs Inc.
- Dr Richard Sclove, Founder and Research Director,
the Loka Institute
- Dr Donald Fraser, Director, Boston Photonics
Centre
- Dr Tom Durant, Assistant Director, Massachusetts
General Hospital
71. The lively after-dinner discussion highlighted
concerns about future public debates on biotechnology in the US.
The biotechnology community are clearly alarmed and irritated
at the prospect of what they would condemn as an ill-informed,
non-scientific debate on their work being exported from the United
Kingdom to the US. Their response is to try to educate the public
and point out the economic and health benefits which new biotechnology
will bring.
FRIDAY
22ND
OCTOBER,
BOSTON
Massachusetts General Hospital (MGH)
- Dr David Blumenthal, Director of the MGH-Partners
Institute of Health Policy
- Dr John Potts, Director of Research, MGH
- Dr David Glass, Associate Director, Corporate
Sponsored Research and Licensing
- Dr Greg Koski
- Dr Janet Miller
- Peggy Slasman, Chief Public Affairs Officer
- Dr Tom Durant, Assistant Director, MGH
72. The Massachusetts General Hospital is one of
the leading research hospitals in the US. It is the largest non-governmental
employer in Boston with over 10,000 employees. The MGH has the
largest hospital-based research programme in the US (annual budget
over $200 million)it receives more funds from the NIH than
any other independent US hospital. Founded in 1811, it is the
oldest and largest teaching hospital of Harvard Medical School.
The MGH runs public education programmes on disease prevention
and other healthcare issues.
73. Under the present funding arrangements, the public
lobbies the Appropriations Committee in Congress over the total
budget, but scientists at the NIH control its distribution. There
was little awareness of the NIH's new Council of Public Representatives
(COPR), but the MGH did highlight the councils which looked at
the distribution of grant awards within each NIH institute: these
were under a statutory obligation to include lay members.
74. Stem cell research was cited as an area where
research was being held back by public concerns. The question
of functional genomics needed to be handled carefully, since it
raised questions of individual rights. There was concern about
the disparity between the enthusiasm of the science community
for this work and its demonstrated benefits to patients.
75. The overall message we received from the MGH
was that when considering communications, public relations and
trust, it was vital that organisations and individuals pay attention
to how they handled errors that affected the public. Although
errors should be minimised, a certain number were inevitable,
and these should be dealt with swiftly, honestly and openly. Following
the lead of politicians by employing "spin doctors"
would have disastrous results for public trust in the medical
community.
Massachusetts Biotechnology Council (MBC)
- Janice Bourque, Executive Director, MBC
- Stephen Mulloney, Manager, Government Relations
and External Communications
- Dr Una Ryan, President and CEO, Avant Immunotheraputics
Inc.
- Loretta McLaughlin
- Andrews Grinstead
- Joseph Donovan, Director, Emerging Technology
Development at the Massachusetts Office of Business Development
76. The Massachusetts Biotechnology Council (MBC)
is a non-profit trade association for biotechnology companies.
It was founded in 1985, and now has 245 members. The MBC runs
a number of public forums to provide business leaders, parents
and community leaders with information about the biotechnology
industry, its economic impact and the career opportunities it
affords in Massachusetts. During election years, the MBC arranges
meetings between representatives from the biotechnology industries
and candidates to address issues of legislation and government
regulation.
77. Biotechnology companies aroused a great deal
of public interest since they were at the cutting edge of technology.
It was thought that the US public generally liked science because
it was successful, and not because they were well informed about
it or because they lacked reasons to be suspicious of scientists
(e.g. those from tobacco companies).
78. Although the MBC membership includes organisations
working on both medical and food applications of biotechnology,
the two areas sometimes needed to be considered separately. The
public thought scientists involved in medical research were working
towards the public good, but those working on food were less well
regardedthere was no shortage of food in the US, whereas
people were still falling ill!
79. Although the MBC were aware that public concerns
over GM food that had been raised in the United Kingdom could
soon hit the US, communication that involved listening to the
public was not their main priority; educating the press and opinion
formers about the benefits of biotechnology was their primary
role.
Summary
80. The Committee members gained many insights
into how very similar issues are regarded and handled in the US
as compared with the United Kingdom.. Perhaps the most important
message was the importance attached, both philosophically and
practically, to the concepts of openness and transparency. The
Freedom of Information Act, the Government in the Sunshine Act
and the Federal Advisory Committees Act have built up a tradition
of access to the public: information about regulatory agencies'
decisions and the science on which they are based has to be made
available, and committees which provide advice to federal government
must meet in public. Even when only a few people request information
or attend meetings, the knowledge that the information is available
and the meetings are open is itself reassuring.
81. On the other hand, we were less impressed
by the impact of public lobbying on the distribution of research
moneys, where, in particular, the line-by-line scrutiny of Congress
can significantly distort priorities. The use of the courtroom
as a forum in which to play out science disputes is another practice
which appeared undesirable. In our opinion litigation usually
represents a failure of regulation; time-consuming, expensive
legal disputes would not remedy the types of controversies we
have been concerned about in our inquiry.
82. We were, finally, struck by the extent to
which the desire for improved communication between science and
society in the US parallels that in the United Kingdom, and that
in both countries there is a recognition that existing techniques
have many limitations.
JENKIN OF RODING
31 January 2000
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