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The Progress Educational Trust (PET) is a registered charity (number 1011897) whose fundamental objective is to create an environment in which ethically sound research and practice in genetics, assisted conception, embryo/stem cell research and related areas will thrive. The ultimate beneficiaries of all of PET's work are families and individuals threatened by infertility and genetic disease, including people wanting an opportunity to give birth to healthy children. As with all scientific and medical advances, particularly those raising sensitive social and ethical issues, it is vital to champion the interests of patients by raising public awareness and engaging with policymakers and professionals. PET has developed a niche operating in the 'civic space' between government and regulators on the one hand, and those directly or potentially affected by developments in biomedicine on the other, as well as engaging with researchers and practitioners at the forefront of relevant biomedical fields. PET seeks to bring timely influence to bear on policymakers as new advances and issues arise. This is achieved through high-profile public events, policy work, educational initiatives, print publications, and PET's flagship publication BioNews – a highly regarded free weekly email news digest, commentary service and website with a circulation of 10,000. PET specialises in developing material that is that is simultaneously targeted at lay and specialist audiences – comprehensible by the former, but nonetheless regarded as valuable and authoritative by the latter. Genetics, assisted conception and embryo/stem cell research are fast-moving areas subject to complex regulation, and professionals and the public alike sometimes struggle to keep up with the science and ethics involved. It is important to herald new technologies, while also carefully managing expectations so as not to create false hope. It is also important that professionals are kept aware of changes in policy which could affect their work, and that patients are kept aware of changes in policy which could affect their treatment. The wellbeing of the community PET serves is enhanced not only by direct medical help, but also by people having a fuller understanding of the complexities of the science, policy and ethics that relate to their circumstances. Individuals who do not themselves suffer from a genetic condition may nonetheless be concerned about transmitting one to their children - for example, if Huntington's disease is present in their family. Others, such as lesbian couples, may require assisted conception for reasons other than biological infertility. Where fertile individuals and couples use gamete donation for genetic reasons - sperm donation where there is a dominant disorder in the man and a recessive risk for the couple, and egg donation where there is a dominant disorder in the woman or X-linked risk to her sons - then PET is uniquely placed to address both the infertility and the genetic aspects of their predicament. PET's community also includes volunteers who make an invaluable contribution to the charity's work, postgraduate interns whom the charity trains in the art of science communication, and partner organisations with which the charity exchanges knowledge and resources. The charity is based in London and organises events and initiatives throughout the UK, while its BioNews publication is international in both its scope and its readership. |
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