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• Animal research
• Genetic research
• Stem cell research
• Conflicts of interest policy for the Scientific Advisory Panel

Animal research

Action Medical Research understands that some people are concerned about the use of animals or animal tissue in medical research. However, the use of animals has helped find new antibiotics, treatments and vaccines that have relieved suffering and saved millions of lives. The UK is regarded as having some of the strictest regulations and highest welfare conditions for animal research in the world and this ensures that animals are only used when absolutely essential.

Action Medical Research does not carry out research itself but supports research projects that take place in hospitals and universities in the UK. As a member of the Association of Medical Research Charities (AMRC) we support the principle of using animals in research when it is necessary to advance understanding of health and disease and to develop new treatments. This research only takes place where there is no alternative available. All AMRC member charities support this principle, as outlined on the AMRC website. 

The majority of the research projects we support do not involve the use of animals or animal tissue. Many of them involve working directly with patients who have been affected by a disease or disability. As part of our rigorous scientific review process researchers have to justify why alternative methods cannot be used. Researchers who apply to us for funding for projects involving animals must hold the appropriate Home Office licences.

We only fund research which complies with the law and supports the principle of the 3Rs to replace, refine and reduce the use of animals in research.

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Genetic research

Action Medical Research funds work exploring the genetic causes of diseases and disabilities. Such research helps us to understand more about the normal function of genes and the causes of genetic diseases and ultimately it is hoped that genetic research will lead to better treatments or cures for genetic diseases through correcting or replacing the abnormal gene (gene therapy) or through replacing the proteins that these genes would normally produce.

Action Medical Research does not fund any work that involves human reproductive cloning, which is illegal in the UK.

Action Medical Research funding has helped to identify the genes for a number of conditions including Von Hippel-Lindau syndrome, a disorder that causes the growth of cysts and tumours on the eyes, spinal cord and kidneys; for an inherited form of cleft lip and palate called Van der Woude syndrome; and for the hereditary skin condition incontinentia pigmenti which causes severe blistering and abnormalities of the eyes, teeth, hair and nails. These breakthroughs can lead to better management and care for children and could ultimately lead to new treatments.

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Stem cell research

Some of the charity’s research projects involve the use of stem cells. The aim of stem cell research is to treat a disease by manipulating the patient’s own stem cells (for example, taken from their own bone marrow) or through the donation of stem cells from a healthy donor.

Perhaps the most successful use of stem cells to date has been the use of bone marrow transplants to treat cancers of the blood and immune systems. In the future, stem cell research offers a potentially revolutionary way of treating and ultimately curing a range of conditions such as muscular dystrophy, cerebral palsy, diabetes, multiple sclerosis and brittle bone disease in children (osteogenesis imperfecta).

While there is still much research work to do, the possibilities for medical progress are very significant.

Everyone has stem cells in their bodies, and they occur at the very earliest stages of development through to adulthood. Action Medical Research has been funding work that involves the use of adult stem cells for many years, which aims to use the patient’s own cells or those of healthy donors.

Scientists believe that future medical progress will be achieved by undertaking research in all types of human stem cells, including very early embryos. Research involving embryonic stem cells is subject to stringent regulations by various government agencies, to ensure work adheres to the highest standards and is regulated by two acts of parliament;

i)   The Human Fertilisation and Embryology Act 2008 which instructs the Human Fertilisation and Embryology Authority to be responsible for regulating the use of embryos in the derivation of cells and tissues, and following derivations,

ii)  The Human Tissue Authority (as instructed by the Human Tissue Act 2004) is responsible for the processing, storage and distribution of any cell lines or tissues, including fetal tissue.

Any research involving embryos or fetal tissues requires approval from an independent research ethics committee.

Action Medical Research will consider funding stem cell research that involves human embryonic stem cells providing it follows these strict UK regulatory guidelines.

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Conflicts of interest policy for the Scientific Advisory Panel

Action Medical Research aims to ensure that research proposals are assessed objectively and impartially. Review by an appropriately constituted group is seen as an essential element of the decision making process. The Board of Trustees relies heavily on the willingness of members of the medical research community to give time to participate in review groups and appreciates their willingness to do so.

1. Purpose of this document.

The purpose of this document is to minimise the potential for conflicts of interest arising and to protect the charity and those who work for it from any perception, real or otherwise, that the external interests and affiliations of its Scientific Advisory Panel members might interfere with their ability to work towards the furtherance of the charity’s objectives. 

2. Declaration of interests 

a) Scientific Advisory Panel members must declare any disclosable external interest on their appointment to the charity, and annually thereafter. A register of interests will be held by the charity, updated annually and overseen by the Director of Research. 

b) Interests which should be disclosed by such individuals include: 

• Equity interests (if worth £10,000 or more, or more than 1% of the total issued capital) in enterprises with involvement in pharmaceuticals, healthcare, biotech or related areas, or in any other enterprise that may have a real or perceived interest in the work of the charity. Third party investments (e.g. ISAs) should be held exempt from this.
• Consultancies and other external appointments (paid and unpaid), together with details of any remuneration or other benefits arising from these. 

c) Panel members (including trustees who serve on panels) should also adhere to the spirit of this document and declare any other interests which they feel may be a source of conflict, or which might be perceived to conflict, with the interests of the charity. This includes interests held by the panel members’ spouse or children. 

3. Discussion of proposals 

a) Details of applications, meeting papers and related correspondence and the names of external referees are strictly confidential and should not be discussed with persons outside the review process. 

b) Discussions of a proposal between members of a panel which occur outside a panel meeting should be declared to the Chair of the committee.

c) If a panel member (including serving trustees) is approached by an applicant for technical advice on an application, he or she may provide advice, but must report this to the panel Chair and Director of Research. They may subsequently be asked by the Chair to absent themselves from a discussion of the application concerned. 

4. Managing conflicts of interests 

a) Conflicts include; an application from a panel member as a principal investigator, co-applicant or supervisor, applications from their Department or their Division, applications from family members, applications where a panel member is collaborating on a grant and applications where a panel member may directly benefit from an award.

That member will not receive documents pertaining to the application, learn the identity of its referees or receive its referees' reports. He or she must retire from the meeting when the application is assessed and not score the application. This should also apply to trustees who serve as panel members and are applicants in the grant round. 

b) The Director of Research/Research Department of the charity will initially identify conflicts of interest at outline application stage. Where this is identified panel members will not be involved in the assessment of that outline application. Potential lead speakers will be asked to declare further possible conflicts at outline assessment. 

If a further conflict has been identified at the full application stage then the panel member must declare an interest as soon as the existence of a conflict becomes apparent and may be asked to withdraw from any consideration of that application. The Chair asks the panel to declare any conflicts that may have arisen since the full application was made, or that have not already been identified, at the start of a panel meeting.

c) In addition to the panel conflicts noted above, where the panel member is serving as the Chair, and an applicant or co-applicant on a grant application, he or she must declare an interest and should not be involved in that panel meeting. Another panel member/vice chair will Chair the meeting to prevent any undue influence. 

d) Panel members who could be seen as a direct competitor of the applicant (e.g. they are funded or applying for funding on a similar project to the proposal under discussion) or have collaborated or published with the proposal applicant within the past three years, or work with the applicants in the same institution, should declare an interest and may be asked to leave the room for the discussion of that application, or may be allowed to stay, but not vote on the application. In cases where the potential for conflict is uncertain, the Chair of the advisory panel shall judge whether the individual should be excluded from the discussions. Where the potential for conflict is uncertain and this involves the Chair, then the Director of Research may refer this to a medical/scientific trustee or, if it is during a panel meeting, refer this to the panel as a whole. 

5) Resolution conflicts of interest 

a) The Charity recognises that the majority of conflicts or potential conflicts will relate to a particular issue and as such will not present any long term restrictions on an individual’s ability to work for the charity or to sit on its panels. 

b) In a small number of cases, major conflicts of interest may arise which compromise an individual’s ability to continue in their position on the panel. Where such a situation relates to a member of a panel, the matter will be discussed by the Chair of the panel together with the Director of Research. In cases where agreement cannot be reached through this means, the case will be referred to relevant trustees of the charity with research experience. 

c) Members of panels are expected to declare any potential conflicts of interest relating to individual funding decisions to the Director of Research before the meeting wherein they will be discussed, or during the meeting as soon as the existence of a conflict becomes apparent. 

d) In cases where an individual is uncertain as to whether a conflict of interest exists or not, they should report this to the Director of Research. The Director of Research shall discuss the matter with the individual as necessary and report to the Chair, who will decide on a course of action. 

e) If an individual is concerned about a possible conflict of interest involving another member of a funding panel, then he or she should raise the matter with the Chair of the panel or the Director of Research. 

6) Confidentiality

a) Details of research applications and related correspondence, Scientific Advisory Panel meeting papers, and the identity of external referees are strictly confidential and must be kept secure and not disseminated to or discussed with others outside the review process. Electronic information and printouts should be kept secure and be disposed of securely after the decision has been reached.

b) Panel members should refuse any direct requests for information or feedback from applicants on how a particular judgement was reached. Feedback comments to applicants (successful or unsuccessful) will be anonymised and should only be given by the charity via the Director of Research or the Research Department of the charity. 

c) While membership of the Scientific Advisory Panel will be publicly available, the identity of reviewers in relation to specific grants will be kept confidential.

7) Updating the policy 

a) The charity will review this policy, if necessary, every three years.

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