Personalised healthcare

New developments in medical profiling and online medicine are promised by their providers as leading to a new era of ‘personalised healthcare’.

These developments include direct-to-consumer personal genetic profiling and body imaging, and websites that provide health advice, storage of health records and medicines for sale. This report weighs up the benefits and harms, along with the ethical values that come into play.

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Bioinformation

Fingerprinting and DNA profiling are valuable tools in the fight against crime, but there is a debate about whether police powers to keep people's details on record are justified.

This report uses the principle of proportionality as a basis for recommendations in a number of areas including the use of the National DNA Database.

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Genetics and behaviour

Research is exploring how genes and the environment influence behavioural traits such as aggression, anxiety, intelligence and sexual orientation.

This report addresses concerns over how this information could be used to try to predict, change or select such traits.

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Patenting DNA

Thousands of patents for DNA sequences have been granted. This report considers whether the DNA patent system is achieving its aims of stimulating innovation for the public good, and rewarding people for useful new inventions.

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GM Crops

The Council set up a Working Party in 1998 to consider the ethical, social, and regulatory issues raised by the genetic modification of crops, several years before this became the topic of fierce public debate in the UK and abroad.

The final report, published in 1999, considers aspects of environmental protection, food safety and consumer choice.

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Mental disorders

Research into the genetics of mental disorders, such as schizophrenia, Alzheimer's disease and depression, may help diagnosis and treatment.

This report considers the ethical concerns raised, for example, around reproductive decisions and stigma.

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Future work - 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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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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Mitochondrial donation - Background: What are mitochondria?

Mitochondria are small structures that are present in all the cells of the human body in multiple copies. Mitochondria are found in the cytoplasm, a gel-like substance inside the cell that surrounds the nucleus. Mitochondria produce the energy that each cell in the human body needs in order to function. Serious health problems can arise if we have mutations in the genes contained in the mitochondria, as this affects the energy available to the cell.

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