Children and clinical research
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.
The culture of scientific research
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.
Novel techniques for the prevention of mitochondrial DNA disorders: an ethical review
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.
Human bodies: donation for medicine and research
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.
Dementia: ethical issues
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.
Critical care decisions in fetal and neonatal medicine: ethical issues
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.
The ethics of research related to healthcare in developing countries: a follow-up discussion paper
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.
Pharmacogenetics: ethical issues
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.
The ethics of research related to healthcare in developing countries
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 cell therapy: the ethical issues
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.
Human tissue: ethical and legal issues
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: ethical issues
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.
Children and clinical researchChildren and clinical research
The culture of scientific researchThe culture of scientific research
Mitochondrial DNA disordersNovel techniques for the prevention of mitochondrial DNA disorders: an ethical review
DonationHuman bodies: donation for medicine and research
DementiaDementia: ethical issues
Neonatal medicineCritical care decisions in fetal and neonatal medicine: ethical issues
Research in developing countries: follow-upThe ethics of research related to healthcare in developing countries: a follow-up discussion paper
PharmacogeneticsPharmacogenetics: ethical issues
Research in developing countriesThe ethics of research related to healthcare in developing countries
Stem cellsStem cell therapy: the ethical issues
Human tissueHuman tissue: ethical and legal issues
Genetic screeningGenetic screening: ethical issues
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- 2 October 2015Building on what we heard from children in Kilifi, Kenya
- 2 March 2015“If you know it, I’d like to know it too” – involving participants in genomics research
- 25 November 2013What do you mean – ask children?!
- 13 September 2013Young people show adults how it’s done at paediatric research conference
- 8 August 2013Our lives, our bodies, our rights: young voices on children's involvement in research
- 13 May 2013Forward look: thoughts from a new Council member
- 4 December 2012Would you let your child take part in clinical research?