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The Progress Educational Trust (PET), informing debate on assisted conception and genetics

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Human Clinical Embryology and Assisted Conception MSc

POLICY WORK

Since the Progress Educational Trust (PET) was originally founded, policy has been an important focus of its work. The charity has established a reputation for authoritative, balanced comment and debate, and for timely influence on policymakers as new advances in genetics, assisted conception, embryo/stem cell research and related areas are assessed by the UK government, Parliament, and bodies such as the Human Fertilisation and Embryology Authority and the Human Genetics Commission.

In the years after PET was founded, its efforts were concerned with the implementation of the Human Fertilisation and Embryology Act 1990. The charity subsequently went on to be involved in the formulation and implementation of the successor to this legislation, the Human Fertilisation and Embryology Act 2008. As the latter was developed and debated in Parliament, PET helped coordinate strategy among professional bodies, patient groups and other organisations with an interest in its content and wording, via a strategy group chaired by PET Director Sarah Norcross. This work by PET was integral in keeping lines of communication open between the key scientific players, politicians, policymakers and journalists.

PET specialises in brokering relationships between stakeholder groups and relevant figures in policy and regulation, helping the latter to understand the concerns of the former, while helping the former to understand the rationale of the latter. Many of the stakeholder groups which PET assists in this way are small and disparate, and do not have adequate resources or expertise to deal with all of the issues which affect them. For example:

  • PET has assisted patients whose frozen embryos were to be mandatorily destroyed, because they fell between the requirements of an outgoing regulatory framework and an incoming regulatory framework for embryo storage. The charity helped bring about a change in the law that allowed these patients to continue to store their embryos.

  • PET has assisted the deaf community in relation to a legal prohibition on the selection of embryos affected by disability. The charity brokered discussions between deaf interest groups and the relevant government authorities, and organised an event for a mixed deaf/hearing audience where the issue was clarified and debated.

  • PET has assisted women whose daughters have Turner Syndrome, who need the option of intergenerational egg donation in order to give their daughters the future option of conceiving children of their own. The charity issued briefings supporting the passage of relevant embryo storage regulations.

PET's Founding Chair of Trustees, Professor Marcus Pembrey, has long been involved in policy concerning genetics and assisted conception alike. As well as being involved in both the 1990 and 2008 Human Fertilisation and Embryology Acts, he served as Consultant Adviser in Genetics to the Chief Medical Officer at the UK Government's Department of Health from 1989 to 1998. As a member of the Department of Health's Advisory Committee on Genetic Testing (now subsumed into the Human Genetics Commission), he chaired the subcommittee that published the first Code of Practice and Guidance on Human Genetic Testing Services Supplied Direct to the Public.

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