Select Committee on Science and Technology First Report


APPENDIX 5: NOTE OF THE VISIT TO WASHINGTON DC

54. The Sub-Committee visited Washington DC, Bethesda and Baltimore on 18 and 19 January 2005. Members present were Lord Oxburgh, Lord Sutherland of Houndwood (Chairman), Lord Soulsby of Swaffham Prior and Baroness Walmsley. They were supported by Michael Collon (Committee Clerk), Jonathan Radcliffe (Specialist Assistant) and Michael Norman (Committee administrator). They were accompanied by staff of the British Embassy: Phil Budden (First Secretary, Science and Technology), Joshua Mandel (Senior Adviser, Science and Technology) and Matt Bricken (Research Assistant, Global Issues Group).

55. The purpose of the visit was to study the organisation and conduct in the United States of research into matters related to ageing, both publicly and privately funded, and to hear about some of the research projects being undertaken.

Ellison Medical Foundation

56. The Committee first visited the Ellison Medical Foundation. The Foundation was established as a non-profit corporation in the latter part of 1997 through the generosity of Lawrence J. Ellison, founder and CEO of Oracle, "for the purpose of positively affecting scientific discovery by funding basic biological and biomedical research, with the expectation that the research would significantly impact people's lives".

57. A Scientific Advisory Board was established in 1998 to guide the Foundation in the fields of research that would benefit from financial support and have an important impact on public health. The Foundation initially focused on funding research that addressed the basic biological components of ageing, including its processes, related diseases and disabilities. The first awards on ageing research were presented in 1998.

58. The Committee met Dr Richard Sprott. Dr Sprott was previously the Associate Director of the National Institute on Aging, but in 1998 was recruited to become the first Executive Director of the Ellison Medical Foundation.

59. Dr Sprott told the Committee that Mr Ellison had taken the view that public funding of research was too much orientated towards research into diseases, to the exclusion of basic scientific research. He felt that public funds allocated to research by the National Institutes of Health (NIH), and in particular the National Institute on Aging (NIA), did not allow for sufficiently high risk research to be carried out. He was content himself to take risks with his own money, and to fund twenty projects even if it was likely that only one of them would be successful.

60. New Scholar awards of $50,000 a year for 4 years were made to young researchers for the sort of creative research for which they would not get public funds. The funding was for good people with good ideas, rather than for projects. Applications were limited to 4 pages, though a number of referees were required. A small outside review group decided which applications should succeed.

61. A number of Senior Scholar awards were also made each year, consisting of grants of $150,000 a year for 4 years made to established researchers, together with grants of the same order for administration costs. The total value of Senior Scholar awards was therefore of the order of $1 million. Applications for these were only 2 pages long. They went before a panel of 6 reviewers who read all the applications and listed the top 6 in order of priority. Applications listed by all the reviewers were automatically granted; those listed by none were automatically refused. Those whose applications were listed by some but not all reviewers might be asked to make a further 3-page application.

62. On the basis of such brief applications, the Foundation had been putting $20 million a year into aging research. It would not be possible for public funds to be allocated on the basis of such a process. The Chairman contrasted this with the position in the UK, where researchers spent a substantial proportion of their time completing applications for grants.

63. Dr Sprott explained that only 4% of the funds were spent on administration. The work depended entirely on the will of the benefactor. It was open to Mr Ellison at any time to review the direction of the funding, and to terminate projects. He and the Scientific Advisory Board had recently independently reached the conclusion that funding work on infectious diseases was not worth continuing, and that more funds should be put into ageing research.

64. The Foundation drew a sharp distinction between the biology of ageing and diseases of ageing. Its funds were applied to basic biology, not to cures for diseases or, for example, to vaccines. Its objective was not extension of life expectancy, but improving the quality of the terminal third of the lifespan. Its interest was in understanding the basic processes of ageing. Until recently the Foundation had contributed 20% of the funds spent on basic research into ageing; now the NIA was contributing more, but the proportion funded by the Foundation was still 10%.

65. As an example of work currently funded, Dr Sprott gave an outline of the work on cell senescence and the shortening of telomeres. $20 million spent on this was well worthwhile.

66. Internationally, in the 1980s, investments in ageing research had been made by the UK, France, Italy and the Netherlands. After putting a great deal of money into the field over 5 years, France and the Netherlands had decided that this work was unproductive, and ceased to fund it. But Italy had persevered with the education of new scientists in basic molecular science.

67. The key was to attract the brightest young scientists and direct them towards pure research into ageing. The effect was that after 4 years they were committed to this research, which resulted in some of the best young scientists being in this field. This raised the profile of ageing research, which in turn attracted the best scientists. Until a few years previously ageing had, apart from nutrition, been the least highly regarded field of research. The position now was very different.

68. The Foundation was not afraid of controversy. Much of the work it funded involved experiments on animals, and it might soon consider funding stem cell research.

69. Funding was also provided for conferences and developing infrastructure. For example, the Foundation supported the "Science of Aging Knowledge Environment" (SAGE KE)—an online resource for researchers hosted by the American Association for the Advancement of Science.

70. Asked how the position in the UK might be improved, Dr Sprott said that he did not see any value in a bricks and mortar institute dedicated solely to ageing research; this tended to isolate researchers on ageing from other researchers. The UK could have great influence on sharply focussed basic research with an investment of $20 million. The problem was to get the best scientists to leave existing posts in other institutions. A measure of success was whether the work achieved what the application for the funding grant had said hoped to be achieved.

71. It was noted that in the US, not many researchers were medically qualified. Dr Sprott was not convinced that research carried out by MDs was of particularly high quality.

National Institute on Aging, Washington DC

72. The Committee next visited the headquarters of the National Institute on Aging (NIA). The NIA is one of the 27 institutes of the National Institutes of Health (NIH) based in the Washington suburb of Bethesda. Congress granted the authority for the setting up of the institute in 1974. The purpose is to provide leadership in ageing research, training, health information dissemination, and other programmes relevant to ageing and older people. Subsequent amendments designated the NIA as the primary federal agency on Alzheimer's disease research.

73. The NIA sponsors research on ageing through extramural and intramural programmes. The extramural programme funds research and training at universities, hospitals, medical centres, and other public and private organisations nationwide. The intramural program conducts basic and clinical research on the NIH campus in Bethesda, and in Baltimore.

74. Over lunch, the Committee met Dr John Hardy, Chief of the Laboratory of Neurogenics, and were shown around his laboratory. Originally from the UK, he had moved to the US in the 1990s. He still retained close ties with British academe, and had recruited several researchers from research groups in the UK. Dr Hardy felt that the UK had become over-restrictive in its regulation of human tissue samples; it was increasingly difficult to obtain specimens for research. It was his opinion that stem cell research would not benefit his particular field.

75. The Committee met Dr Richard J. Hodes, the Director of the NIA; Dr Huber Warner, associate director with responsibility for the Biology of Aging Program; Dr Miriam Kelty, associate director for Extramural Affairs; Dr John Haaga, deputy associate director of the Behavioral and Social Research Program; and Dr Tamara Jones.

76. Dr Hodes explained that there had been considerable resistance to the setting up of the NIA, including two Presidential vetoes. However it now had an annual budget of $1billion. It had a considerable intramural research facility, but most of the funds went on extramural research. There were four extramural research programmes:

  • the Biology of Aging Program, headed by Dr Warner;
  • the Behavioral and Social Research Program;
  • the Neuroscience and Neuropsychology Program; and
  • the Geriatrics and Clinical Gerontology Program.

77. The primary task of the NIA was the funding and supervision of research projects in each of these four programmes. A distinction was drawn between research into the ageing process, the impact of the process on individual diseases especially prevalent among older people, and research on those diseases. It was easier to fund research into specific diseases than research into the ageing process.

78. Asked about the accountability of the NIA, Dr Hodes said it was responsible to Congress for the use of the funds voted for it. The mission of the Institute was very broad, and the appropriation came with little specificity as to the use to be made of it. However the legislation establishing the NIA had been amended to designate the NIA as the primary Federal agency for Alzheimer's disease research, and it was expected that at least half the NIA budget would be spent on research into Alzheimer's.

79. There was no requirement to provide an annual report to Congress, or to the Department of Health and Human Services (DHHS). There could however be Congressional hearings; normally these were for the purposes of information, but they could occasionally become confrontational.

80. Dr Jones added that in 2004 the NIA had attended a record of nine hearings on, inter alia, appropriation, Alzheimer's, longevity, frailty, retirement, the Older Americans Program 2004, and meals on wheels. The House of Representatives had done away with its committee on aging, but the Senate had two committees with interests in the topic. The NIA was not allowed to lobby Congress, but there was a daily process of contact, and regular provision of information.

81. Continuing, Dr Hodes said that accountability for the quality of NIA research was ultimately to the National Advisory Council on Aging (NACA), which advised the Secretary of the DHHS, the Assistant Secretary for Health, the Director of the NIH, and himself as Director of the NIA. The Council met three times a year to consider applications for research and training, and to recommend funding for those applications that showed promise of making valuable contributions. The Council also made recommendations to the Director of the NIA regarding research conducted at the Institute. There was a simple test for success: had research improved the quality of life of older people?

82. Dr Hodes said that the NIA did not have a great deal of contact with the Ellison medical foundation. Each was aware of and respected the other's work, but the Foundation's work was almost entirely concentrated on young researchers. Dr Warner added that they had to be careful to avoid overlap with funding of research by private foundations. There was not yet much overlap in the field of ageing because there was not much such research. However nearly every Ellison senior scholar was also funded by the NIA. He was more worried about the balance between programmes than about overlap.

83. Dr Kelty explained that the scientific community trusted the NIA because research grants were not made by policy-makers, while the reason administrators trusted the allocation of research funds by the NIA was because peer review demonstrated that the research was of value.

84. An example of a project to which large funds had been allocated was biomarkers. Fifteen years earlier, the Biology of Aging Program had set aside funds for research into biomarkers, but ultimately it had not proved useful. The research had been attempting to find predictive indications of ageing, but the technology was not ready for it.

85. Dr Warner said that a contrast was the programme on the genetic and molecular basis of ageing. The first five years had not proved promising, but they had persevered, and the second five years had been spectacular. Research based on fruit flies had shown that selecting the offspring of older mothers for two or more generations could lead to an increase in life expectancy of up to 75%. A number of scientists working on different but interrelated aspects of this had had relatively little contact, and the NIA initiative had brought them all together.

86. Dr Haaga spoke about demographic issues. The Behavioral and Social Research Program had made a number of grants on work designed to measure objectively people's fundamental well-being. Measurement of healthy life expectancy (HLE) was a hot area of research. In the US, unlike the UK, HLE had been rising at the same rate as life expectancy over previous years, but currently obesity had the potential to reverse this.

87. Asked what datasets the UK should start building now as a basis for future research, Dr Haaga explained that the health care system in the UK provided a single database which facilitated research. In the US, by contrast, there were problems about access to Medicare data and medical records. They had now brokered access to that information, and to information about income for research on the social aspects. But, as in the UK, there was more concern about protecting privacy, at the expense of making data available for research.

88. One of the most profound discoveries of the last 50 years had been the impact of social status on health. This dwarfed differences between the sexes. Much of the data had come from the Baltimore longitudinal study. This had been going for forty or fifty years. Subjects came back every year for two days of tests. The results were good, but the study was expensive. Data from other countries where health statistics were well documented were also used. Dr Haaga cited the 2002 English Longitudinal Study of Ageing.

89. The US had no tolerance for discrimination by age, and would not countenance the NHS view that a person could be too old for treatment to be cost-effective and worthwhile. But there was considerable discrimination by social status.

90. The Chairman explained that the Committee had concerns about the disparate nature of research activity in the UK, and the apparent lack of coordination. Dr Hodes agreed that there were also coordination problems in the US, both between all the institutes comprised in the National Institutes of Health, and also with other researchers looking at different parts of the life-span, including child health.

91. Training was an important part of the NIA's work: not only training researchers for such projects, but also training those to support research. They were at that time training an outstanding economist to work on the ageing process. Dr Haaga explained that, although there were country-wide variations, there was a general shortage of gerontologists, and of nurses with specific training in gerontology. The NIA was funding programmes to insinuate gerontology into the training programmes of all medical staff.

92. Asked what he felt were promising long-term areas of research, Dr Warner instanced research into the replacement of cells—possibly but not necessarily stem cell research. The most important thing the Biology of Aging Program could do was increase the mobility of over-70s. Dr Haaga suggested that it was important to persuade people to do what was good for them, rather than just lecturing them about it.

Fogarty International Center

93. The Committee briefly visited the Fogarty International Center, the smallest of the NIH institutes, which supported the NIH through international partnerships and addressed global health challenges through collaborative research and training programmes. The Director explained the international work of the NIH.

National Institute on Aging Intramural Research Program, Baltimore

94. On Wednesday 19 January the Committee visited the NIA Intramural Research Program in Baltimore. The Committee met Dr Michele Evans, Deputy Scientific Director of the NIA; Dr Vilhelm Bohr, Chief of the Laboratory of Molecular Gerontology; Dr David Schlessinger, Chief of the Laboratory of Genetics; Dr Donald Ingram, Acting Chief of the Laboratory of Experimental Gerontology; Dr Linda Fried, Director of the Division of Geriatric Medicine and Gerontology at Johns Hopkins Hospital (who is also a member of the National Advisory Council on Aging); and Dr Mark Mattson, Chief of the Laboratory of Neurosciences.

95. The Committee was welcomed by Dr Michele Evans.

96. Dr Will Bohr explained that he was also a professor at Aarhus University and had worked in Europe, so that he was in a good position to compare funding in the US and in Europe. Only 10% of the NIA research budget funded intramural research; the remaining 90% funded extramural research. This could be and was used to fund research in other countries. This was in contrast to EU funding, which could be used only to fund research in the Member States.

97. Dr Bohr was strongly of the view that a research centre was necessary. A virtual centre was inadequate. A real centre with walls had the advantages of being able to attract top-quality research scientists by paying them competitive salaries. It provided a training ground for new researchers, and created a good working environment.

98. Molecular biology of ageing was now top-tier science. The goal was to add life to years, rather than years to life. The laboratory did not attempt to cover the whole subject, but focused on those areas at the cutting edge at molecular level. He thought that the NIA attempted to cover too much ground, and suggested that if the UK set up a national research institute, it should not have too wide a remit, but should concentrate on a small number of matters specific to ageing. The advantage of an intramural programme was that it had the resources for high-cost research like the Baltimore longitudinal study. In the past, the programme had dealt with high-risk research which could not be done privately. Now however the NIA had to compete with other researchers.

99. Dr Bohr saw environmental effects as being at least as important as genetics on ageing. However, there were some rare genetic diseases that allowed scientists to understand the ageing process, especially Werner's syndrome, which led to premature ageing, and Bloom's syndrome, sufferers of which had a much higher incidence of cancer. The effects of low-level radiation were also being studied. His view in general was that some environmental stress was beneficial, as it conditioned the body.

100. Dr Evans was asked about the relationship between the intramural and extramural research programmes. She replied that there was discussion between the two, but that traffic was mainly one-way. The intramural programme had more latitude to get people to work on long-term research which did not necessarily look as if it might have an immediate impact on ageing. An example was Dr Schlessinger's work on genetics. When the laboratory was set up 5 years ago, its major impact on ageing could not have been predicted.

101. The intramural programme obtained resources without competing for them, and was held accountable mainly through informal peer review. Its programme was often adjusted in the light of external evaluation. It was possible to tell researchers about a change in direction, and easy to recruit any necessary new researchers; but less easy to dispense with those no longer necessary.

102. Asked what the critical mass might be for a similar establishment in the UK, Dr Evans replied that it would not have to be as large as the NIA. Work could be done with fewer researchers, but would have to be restricted to fewer topics. Examples might be 5 years on molecular biology, followed by 5 years on translational work. It was a question of picking out the key areas scientists would want to work in. The work might be done in partnership with UK universities. University researchers had the advantage of being able to contact researchers in pharmaceutical companies; NIA researchers were not allowed any such contact.

103. Dr David Schlessinger gave an overview of the work on Genetics. His field of statistical genetics, which lay between epidemiology and pure genetics, was a relative newcomer to gerontological research. His work looked at multiple causality, trying to distinguish the effects of specific genes. The laboratory was studying the extent to which phenomena previously associated solely with ageing might have genetic origins. An example was the menopause. This occurred at about age 50 in most women of whatever ethnic group. However in the case of 3% it occurred in the low 30s or early 40s. This had found to be for genetic reasons: they were born with too few oocytes to enable them to support a full reproductive life-span. For them the menopause, though age-related, was determined at birth.

104. The Committee was told that geneticists were critical of the UK biobank because the level of self-reporting was too high. Many genetic studies had been carried out in Sardinia. The founder population had all arrived at about the same time, and until recently there had been little inter-marriage with other groups. Studies had taken place in four towns among people who had themselves, their parents and grandparents all been born there.

105. Dr Donald Ingram explained that the Laboratory of Experimental gerontology was the newest arrival at the NIA. Current experiments included animal modelling; attempting to identify genes with effects on ageing; cognitive enhancements which might have a direct effect on Alzheimer's; and nutrition and the effect of calorie restriction. This was monitored by the Aging Intervention Testing Program (AITP), and there had been requests for access to it from all over the world.

106. Dr Ingram was critical of advertisements for dietary supplements and hormone replacement therapies which promoted their ability to increase longevity. They had no basis in fact. He felt that regulations were lax in the case of natural ingredients.

107. Dr Linda Fried gave an overview of the work at Johns Hopkins University. They had fifty researchers working solely on ageing. This required a different mindset and different financing to single researchers working on single projects. The work was focused on frailty, seeking to answer why older people became frail. This needed a multi-disciplinary team. The university's work also gave high priority to training, and to translating research into public health practice.

108. Dr Fried said that if a topic excited colleagues, they would want to work together to get funding for it. An alternative was where in the case of a number of related projects the whole could be said to be greater than the sum of the parts. Usually a number of related projects were funded from different sources. It was not essential for all the projects to be funded from the same source, but it was helpful.

109. There was a need to articulate the benefits of an ageing population. Society had abandoned the notion that the elders were the natural governors. This needed to be reconsidered. The use of the experience and wisdom of older people was good socially and good for their own health, and it enabled them to feel they were putting something back into the community. Age cut-offs were arbitrary, and there should be more flexible ways of culling older people. We should not throw away the investment in the education of 20% of the population; the academic world in particular was not making use of their knowledge and experience.

110. Dr Mark Mattson gave an outline of the work of the Laboratory of Neurosciences on Alzheimer's, Parkinson's and Huntingdon's diseases, and of his work on calorie restriction. It was now clear that overeating had a major impact on cardiovascular disease, diabetes, stroke and some cancers—and possibly also Alzheimer's and Parkinson's. Experiments with rats and monkeys had shown that calorie restriction led to increased lifespan. Rats on restrictive diets lived 30% longer, and showed the effects of improved memory. However, there were questions over whether the artificial experimental conditions gave a real control group against which to compare the effects. A pilot calorie restriction experiment was underway with human volunteers, though still in the preliminary stages.

111. Asked about the distinction between ageing and age-related diseases, Dr Mattson said that it had at one time been his opinion that there was no such distinction, and that the two were interrelated, but this was no longer his view. It was not the case that we would all get Alzheimer's if only we lived long enough.

Acknowledgement

112. In addition to those to whom we have specifically referred, the Committee met a large number of other people on this visit. All were extremely welcoming, helpful and generous with their time. We thank them all. We especially thank Dr Sprott, Dr Bohr, Dr Jones and the Embassy staff for their work in arranging our visit.


 
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