Future work - Call for expressions of interest in new project on children in clinical research

The Council has agreed to establish a new work theme to examine the ethical issues raised by the involvement of children and young people in clinical research. The central focus of this project will be to consider whether the current systems for regulating clinical research strike the right balance between promoting the understanding of childhood diseases (and the associated availability of evidence-based treatments for children) and ensuring the proper protection of child participants.

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Biodata - Workshop on genomics, health records, database linkage and privacy

On 22 February 2012 the Council held an exploratory workshop which bought together Council Members, staff and invited experts to discuss the ethical issues raised by genomics, health records, database linkage and privacy.

This topic was identified at the 2011 Forward Look meeting and the workshop was held to help members decide whether the issue merits further examination by the Council. The workshop opened with presentations on the following subjects:

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Future work - Workshop on children and clinical trials

On 9 December 2011 the Council held an exploratory workshop on the ethical issues raised by children taking part in clinical trials. This topic was identified at the 2010 Forward Look meeting and the workshop was held to help members decide whether the issue merits further examination by the Council.

The workshop brought together Council members, staff and invited experts to consider the following key questions:

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Mitochondrial donation - Background: The role of genetic testing

At present, some women with mutated mitochondria who would like to use their own eggs to have a baby can be offered ways to minimise, but not prevent, their risk of passing on passing mitochondrial disorders to their child. This may be done by using embryo testing techniques to gather more information about the risk of passing on health problems. They may be offered preimplantation genetic diagnosis (PGD) and/or prenatal diagnosis (PND).

Preimplantation genetic diagnosis (PGD)

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Mitochondrial donation - Background: Ethical questions arising

Ethical questions which may be considered as part of the project include:

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Broadening bioethics: clinical ethics, public health and global health

Baroness Onora O’Neill gave the Council's Annual Lecture at the Royal Society of Arts on Thursday 19th May 2011.

Download a transcript of the lecture.

Watch a video of the lecture.

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Stem cells - Stem cells: UK developments

The discussion paper Stem cell therapy: the ethical issues was published in April 2000. Since then, many countries have announced new legislation concerning the use of stem cells and therapeutic cloning.

Therapeutic cloning

Under the 1990 Human Fertilisation and Embryology (HFE) Act research on embryos is permissible "to increase knowledge about the causes of congenital disease".

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Human tissue - Chapter downloads

You can download the individual chapters of this report using the links below. (All files are PDFs and less than 600 KB)

Chapter 1 - Introduction

Chapter 2 - Public concerns

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Stem cells - Further conclusions and recommendations

We do not consider that concerns about inappropriate incentives resulting from a potential benefit deriving from the establishment of an EG (embryonic germ) cell line are so great that the donation of fetal tissue for such purposes should be prohibited.

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Stem cells - Key findings

The ability to culture human stem cells long term, and possibly indefinitely, and to control how such cells specialise to form the different tissues of the body offers the possibility of major advances in healthcare.

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