We are generating more data about people’s health and biology than ever before. Combined with advances in IT and data science, this offers significant opportunities to generate new knowledge and improve medical practice; but it also raises concerns about individuals’ privacy.

This report looks at the ethical issues raised by data use in biomedical research and health care. It sets out key ethical principles for the design and governance of data initiatives, and identifies examples of good practice relevant to anyone approaching a data initiative.

Throughout 2014, the Council undertook a series of engagement activities that aimed to inform and advance debate about the ethical consequences of the culture of scientific research.

The project aimed to explore the effects of a wide range of influences on scientific research, including funding mechanisms, publishing models, career structures and governance processes. This report summarises the findings of the project activities, which included a survey of almost 1000 scientists and others, and a series of discussion events at universities around the UK.

Clinical research involving children is essential to increase our understanding of childhood conditions and improve healthcare for children. Yet professionals and parents often feel uneasy about asking children to take part in research, for example because of potential risks or burdens.

This report looks at how children and young people can ethically be involved in research, and makes recommendations about the roles and responsibilities of children, their parents or guardians, researchers and others. A magazine version and a short animation are also available.

Technologies that intervene in the brain offer the potential to help those with conditions that affect the brain, such as Parkinson’s disease, stroke, chronic pain and severe depression.

This report looks at the possible benefits and unintended consequences of intervening in the brain, and sets out an ethical framework to guide the practices of those involved in development, regulation, use and promotion of novel neurotechnologies.

This report considers the interests of people affected by donor conception – donor-conceived people, parents, donors, and all their wider family and social networks – and makes recommendations about what can be done to support, encourage and empower those making decisions about the sharing of information.

Biotechnologies are significant in many aspects of life, from food and energy production to medicine, industry, and economic development.

This report explores the ethical issues and challenges raised by emerging biotechnologies and sets out a ‘public ethics’ approach to help guide improved practice in policy making, research and regulation.

Mitochondrial DNA disorders are incurable genetic disorders that can cause severely debilitating symptoms and can be fatal in early childhood.

New techniques that could prevent the transmission of these disorders are being researched, but are not yet used in treatment. This report explores the ethical issues relevant to the possible use of such treatments in future.

Solidarity in bioethics has received increasing attention but it is often unclear what the concept means.This report proposes a new definition of solidarity and applies it to policy making in the areas of biobanks, pandemics and lifestyle disease.

This project was commissioned by the Nuffield Council on Bioethics and funded by the Arts and Humanities Research Council and the Nuffield Foundation.

Donated bodily material for medicine and research, such as organs, eggs and sperm, are in high demand, and current levels of donation fall short of need.

This report sets out guidance to help people consider the ethical acceptability of various ways of encouraging people to donate, both for treatment of others and for scientific research.

Concerns over energy security, economic development and climate change are driving the development of biofuels.

This report sets out an ethical framework to guide policy making for both current and future biofuels.

The Council has engaged in a number of educational activities to encourage discussion of bioethics among young people and others, including the production of material for teaching and training.

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.

People with dementia, and those who care for them, face difficult ethical dilemmas on a day-to-day basis.

This report concludes that we need to do more as a society to enable people to live well with dementia. We present an ethical framework to help address problems that arise in connection with dementia care, together with recommendations for policy makers.

Some people object to the ‘nanny state’ whilst others want more measures to tackle problems like obesity and binge drinking.

This report considers what the Government, industry and individuals should do to enable people to lead a healthy life.

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.

Families and healthcare professionals face difficult and highly emotional decisions about the treatment and care of extremely premature babies.

This report discusses the ethical, legal and social issues raised and proposes guidelines on giving intensive care to babies born before 26 weeks.

Research involving animals has been the subject of intense debate in the UK and elsewhere.

This report seeks to clarify the debate and aims to help people think through the ethical issues that are raised. It also makes practical recommendations for future policy and practice.

This discussion paper is a follow-up to the Council’s 2002 report on the ethics of research related to healthcare in developing countries.

It explores the practical implications of new and revised guidelines from several international organisations, which were discussed at a workshop in Cape Town in February 2004.

This discussion paper is a follow-up to the Council’s 1999 report on GM crops.

With a particular focus on developing countries, the paper reviews the scientific evidence, socio-economic trends, and developments in policy, trade and regulation.

Research in pharmacogenetics investigates how differences in our genes can affect our response to medicines.

This report considers the implications for research and development of medicines, clinical practice and treatment, and the use and storage of genetic information.

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.

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.

Developing countries urgently need research to help relieve the burden of disease.

It is vital that wealthier countries help sponsor this research, but rigorous ethical safeguards are needed to prevent the exploitation of those who take part. This report defines the ethical standards for healthcare research in developing countries.

Stem cells offer the possibility of major advances in healthcare but research is controversial because the cells are often derived from embryos.

A discussion paper on the key ethical issues, based on discussions held at a round table meeting, was published by the Council in April 2000.

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.

The final report, published in 1999, considers aspects of environmental protection, food safety and consumer choice. A follow-up discussion paper The use of GM crops in developing countries was published in 2003.

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.

Transplants save thousands of lives every year, but there are not enough human organs donated for everybody who needs them. The shortage has led to attempts to develop animal organs that can be transplanted into humans.

This report investigates the complex ethical and safety issues involved in xenotransplantation.

Medical and scientific uses of human tissue include organ transplantation, pharmaceutical testing and genetic research.

The Council published a report in 1995 proposing an ethical and legal framework for the use of human tissue.

Genetic screening for diseases such as cystic fibrosis and sickle cell anaemia raises important ethical, legal and practical issues for the individual involved, their families and society generally.

The Council made this the subject of its first report, published in 1993.