Background

Collaborations between charities and support groups representing people living with rare, genetic and undiagnosed conditions and the life-sciences industry (including companies developing and manufacturing medicines, medical devices, diagnostic tests and screening technologies) can deliver significant benefits by: 

• Helping industry partners to understand what matters most for people living with rare, genetic and undiagnosed conditions and their families; 
• Improving how existing screening technologies, diagnostic tests, treatments and therapies are used to improve health and quality of life;
• Speeding up the development of new screening technologies, diagnostic tests, treatments and therapies.

Policy aims

This policy sets out clear principles and guidance for how Genetic Alliance UK works with the life-sciences industry.

Fit with Genetic Alliance UK’s charitable objectives

We will only seek and accept support from industry partners for projects that help us to deliver our charitable objectives. These are to:

• Relieve persons affected by a genetic, and/or rare, and/or undiagnosed conditions; 
• Advance the education of the public concerning genetic, and/or rare, and/or undiagnosed conditions in such ways as the trustees of the charity see fit.

Compliance with ABPI Code of Practice

The pharmaceutical industry is bound by the Association of British Pharmaceutical Industry (ABPI) Code of Practice.  

We will make sure that any funding or joint activity undertaken by Genetic Alliance UK will comply with the conditions set out in the Code of Practice. In particular, we will be mindful of Clause 27 of the Code of Practice on Relationships with Patient Organisations.

Principles

We will adhere to the following principles when working with the life-sciences industry: 

1. When we work with the life-sciences industry, it will be because we believe that this will bring benefit to people who are living with rare, genetic and undiagnosed conditions and those who care for them. 
2. We will only work with the life-sciences industry when it does not affect our independence, so that we are free to comment both positively and negatively about individual companies and their products. 
3. We will make editorial decisions about the information we publish for people living with rare, genetic and undiagnosed conditions based on the latest evidence and informed by the views of our member community and expert clinical advisers. Our editorial decisions will never be influenced by the acceptance of funding or support from individual companies. 
4. We sometimes advocate for equitable access across the UK to a particular drug, device, diagnostic test, screening technology or treatment. We will not accept funding from individual companies (whether they are product developers, manufacturers or competitors) to support our advocacy activities where they relate to a particular drug, device, diagnostic test, screening technology or treatment. 
5. We will seek support from more than one company for all activities other than fee-for-service arrangements (for example, when we are paid by a particular company for our participation on an advisory board or for providing advice on the design of research or trials).
6. We will not share information with companies that may give one company a competitive advantage over another.
7. We will not accept support from, or work with, any company that is attempting to influence the charity’s policy or information materials, or attempting to influence policy-makers for commercial advantage through association with the charity. 
8. We will not work with an industry partner when it may damage our reputation, and we will terminate any relationship that becomes a threat to our reputation.

How we work with the life-sciences industry

There are a number of ways that we work with the life-sciences industry, including: 

Public awareness campaigns: We accept sponsorship of our campaigns to raise public awareness of the challenges facing people living with rare conditions, genetic and undiagnosed conditions and their families. This includes seeking industry funding for our long running-campaign Rare Disease UK and the annual Rare Disease Day.

Unrestricted educational grants: We apply for unrestricted educational grants from pharmaceutical companies to fund our broader work supporting individuals living with rare, genetic and undiagnosed conditions and their families. 

Advisory Boards and working groups: We will participate in advisory boards and working groups to help an industry partner to better understand what matters most to people living with rare, genetic and undiagnosed conditions and their families. 

Industry-sponsored or industry-organised events: We will attend or speak at industry-sponsored or industry-organised events when there is a clear opportunity to raise awareness of the challenges facing people living with rare, genetic and undiagnosed conditions and their families.

Sponsorship of events: We accept sponsorship of our events to help us fund them and bring together Genetic Alliance UK’s members. Event sponsors have their brand recognised as a sponsor and may attend as delegates, but have no influence over the programme or organisation of the event.

Providing advice on the design of research and trials: We work with industry partners by commenting on the design of research and trials to ensure that they are constructed in a way that collects data on what matters most for people living with rare, genetic and undiagnosed conditions and family carers, and makes it as easy as possible for them to take part. 

Supporting participation in research and trials: We raise awareness among member charities or people living with rare, genetic and undiagnosed conditions when new research or a new trial is being set up by an industry partner, so they can make an informed decision about whether they want to find out more about the trial and take part in it. 

Processes

All decisions about whether to enter into a partnership with or accept sponsorship from the life-sciences industry on a particular project or activity  will be consistent with Genetic Alliance UK’s policy on ethical collaboration.

We will publish an overview of the funding received from the life-sciences industry in our Annual Report and Accounts each year which is available to view on our website.

All partnerships with the life-sciences industry will be subject to a written agreement setting out expectations of both or all parties to collaborations that is signed either by the Chief Executive, Director of Policy, Director of Research or Corporate Partnerships Manager.

Any publications or products resultant from industry sponsorship will carry our logo; copyright and any intellectual property generated will remain with the charity.

No person acting on behalf of Genetic Alliance UK is permitted to accept a personal payment from any company.  Genetic Alliance UK will accept honoraria payments for staff time and reimbursement of expenses for staff when their participation in an activity is consistent with the terms of this policy.

Proportion of charitable income

Genetic Alliance UK generates income from a range of sources each year including trusts and foundations, individual giving, community fundraising, non-industry corporate supporters, legacies and in memory giving.

The Board aims to ensure that the total proportion of our annual income received from the life-sciences industry is no more than 50 per cent each year.

Updated March 2023