Ethical Collaboration Policy

Genetic Alliance UK’s policy for collaborating with other organisations

Ethical Collaboration Policy (Approved December 2013)

This Policy details how Genetic Alliance UK encompassing its associated names and brands including Rare Disease UK (RDUK) and SWAN UK (Syndromes Without a Name) will consider all its collaborations, including partnerships, sponsorship and joint working.

Guiding Principles


Genetic Alliance UK is careful when collaborating with other organisations and individuals that its independent status and its autonomy is not compromised in any way. If there is any possibility that this may be placed in jeopardy we will withdraw from any such activity or initiative. Genetic Alliance UK will not be led by money into positions which are not in the interests of those living with genetic conditions (diagnosed or undiagnosed) or for patient groups representing genetic conditions.


Genetic Alliance UK’s collaborations are intended to influence change, and generate shared learning, as well as income. It is important that both parties respect the expertise and skills that the other brings over and above any financial benefits.

Genetic Alliance UK will not share or sell the details of its membership or networks. Genetic Alliance UK will not promote or endorse products or services from supporters, partners or third parties to our members and contacts through email. Any dissemination, promotion or endorsement will be at the discretion of Genetic Alliance UK.


Genetic Alliance UK aims to be transparent in its relationships with other organisations and individuals. There must be strong grounds for believing a formal collaboration will result in benefits to Genetic Alliance UK and its work. It should always be made explicit what each party is bringing and gaining from a formal relationship. Genetic Alliance UK will also be transparent about who it is working with and the nature of the relationship and work.

Shared Goals

Genetic Alliance UK will seek collaborators whose goals, values and actions promote and/or enable good health. Specifically, we will not work with any organisation that is associated with tobacco. Each collaborator will be judged on a case by case basis.

Obligations of Supporters and Partners

  • In the event of any matter arising which could significantly adversely affect the standing of the supporter or partner in their reasonable opinion, they must inform Genetic Alliance UK as soon as reasonably practical. Genetic Alliance UK also has a duty to keep the supporter or partner informed of relevant information. Genetic Alliance UK reserves the right to take appropriate action to ensure its reputation is not adversely affected in any way as a result of such incidents.
  • A formal collaboration is considered a business arrangement; therefore all aspects must be clear and explicit to all parties involved. All agreements are exchanged in writing and supporters or partners are required to endorse and abide by the ethical collaboration policy.
  • Genetic Alliance UK should be consulted whenever and wherever its name or its project names (including Rare Disease UK and SWAN UK) are used by supporters or partners, for both internal and external communications. Approval must be sought for any copy produced which refers to an initiative from Genetic Alliance UK that is supported/sponsored by a supporter or partner organisation or individual.
  • At no time can Genetic Alliance UK’s logo (including Rare Disease UK and SWAN UK logos) be used without express written permission for every occasion it is used.
  • At no time can press releases be issued that refer to Genetic Alliance UK (including Rare Disease UK and SWAN UK) without our prior approval.
  • Staff, volunteers and trustees on both sides should beware the potential for bias generated through collaborations, where this might impinge on professional judgment and impartiality.
  • Both parties commit to confidentiality requirements at all times.

Conflicts of Interest

Genetic Alliance UK’s aim and mission give guidance to establish which collaborations are appropriate. Successful collaboration requires mutual respect and transparency of benefits. When establishing a new collaboration, both parties should endeavor to ensure that there are no conflicts of interest that cannot be safely managed.

To help ensure potential conflicts of interest are identified and managed appropriately:

  • Genetic Alliance UK gives no warranty that the deliverables of a collaboration will not contain any material that may be disadvantageous to its collaborator’s business or area of work (for example, it will present research findings determined by objective analysis of available evidence regardless of whether they support a collaborator’s work or position).
  • Funders of activities and projects will have no direct control over analysis, conclusions, positions or recommendations by Genetic Alliance UK. In the case of partnership projects or joint activities, the rules of engagement for establishing outcomes must be agreed beforehand and should be transparent.
  • Genetic Alliance UK will be open about other collaborations with organisations working in the same areas or sectors and expects the same approach from its supporters.Genetic Alliance UK will not allow direct access to its members and wider networks by third parties (other than those generated directly by collaboration).
  • Genetic Alliance UK will not allow supporters to link or imply direct material benefits for their products through an association with the charity.
  • Speaker places at Genetic Alliance UK events are determined by Genetic Alliance UK entirely on merit and cannot be determined by any formal supporter or sponsorship arrangements.

December 2013

Genetic Alliance UK would like to acknowledge that this policy draws on the NHS Confederation’s Ethical Sponsorship policy and the King’s Fund Ethical Collaboration policy.