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Ethics briefings
  1. Martin Davies,
  2. Sophie Brannan,
  3. Eleanor Chrispin,
  4. Veronica English,
  5. Rebecca Mussell,
  6. Julian C Sheather

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Disclosure of information and donor conception

Ever so often in the UK, there is a flurry of activity around the information requirements of donor-conceived individuals. In April 2013, it was the launch of a report from the Nuffield Council on Bioethics that brought the issue back to public consciousness.1

Since 1991, information about treatment with donor gametes or embryos has been collected by the Human Fertilisation and Embryology Authority (HFEA). Since then, over 35 000 donor-conceived individuals have been born through treatment in licensed clinics. Medical information and information about donors’ appearance are collected by clinics, and donors are encouraged to put together a ‘pen portrait’ giving information about themselves for any resulting children. One focus of the new report is on improving the quality and quantity of information available about donors.

Traditionally, gamete and embryo donations were practised on an anonymous basis, so that those born as a result of such donation may receive only non-identifying information about the donor when they reach the age of 18 (or 16 years if they wish to check if they are genetically related to someone they plan to enter into an intimate relationship with). This changed in 2005 when donor anonymity was removed so that anyone donating after that time could be identified to individuals born as a result of the treatment. Those who have donated in the past are also able to reregister as identifiable donors. Much concern was expressed at the time that this would exacerbate the shortage of donors although the Nuffield Council on Bioethics reports that, 8 years on, those clinics that actively recruit donors appear to be successful in finding sufficient donors. The report recommends that the option of anonymous donation should not be reintroduced.

A big issue of debate in the UK has been, and continues to be, whether parents should tell their …

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