Book contents
- Frontmatter
- Contents
- Editorial board
- Acknowledgements
- List of contributors
- Introduction
- Part I
- 1 The ethics of clinical research
- 2 Research ethics committees and the law
- 3 The regulation of medical research: a historical overview
- 4 The regulation of medical research in the UK
- 5 Observational and epidemiological research
- 6 Social survey research
- 7 Approaching qualitative research
- 8 Complementary and alternative medicine: challenges for research ethics committees
- 9 The ethical review of student research in the context of the governance arrangements for research ethics committees
- 10 The ethics of genetic research
- 11 Research or audit?
- 12 Randomised controlled trials
- 13 Determining the study size
- 14 Risk assessment for research participants
- 15 Absorbed radiation in patient and volunteer studies submitted to the ethical committee: a memorandum
- 16 A guide to the use of radioactive materials and radiological procedures for research purposes
- 17 Indemnity in medical research
- 18 The prevention and management of fraud and misconduct: the role of the LREC
- 19 Understanding clinical trials: a model for providing information to potential participants
- 20 The law relating to consent
- 21 Writing information for potential research participants
- 22 The law relating to confidentiality
- 23 Research involving vulnerable participants: some ethical issues
- 24 The ethics of research related to healthcare in developing countries
- Part II
- Index
10 - The ethics of genetic research
Published online by Cambridge University Press: 08 January 2010
- Frontmatter
- Contents
- Editorial board
- Acknowledgements
- List of contributors
- Introduction
- Part I
- 1 The ethics of clinical research
- 2 Research ethics committees and the law
- 3 The regulation of medical research: a historical overview
- 4 The regulation of medical research in the UK
- 5 Observational and epidemiological research
- 6 Social survey research
- 7 Approaching qualitative research
- 8 Complementary and alternative medicine: challenges for research ethics committees
- 9 The ethical review of student research in the context of the governance arrangements for research ethics committees
- 10 The ethics of genetic research
- 11 Research or audit?
- 12 Randomised controlled trials
- 13 Determining the study size
- 14 Risk assessment for research participants
- 15 Absorbed radiation in patient and volunteer studies submitted to the ethical committee: a memorandum
- 16 A guide to the use of radioactive materials and radiological procedures for research purposes
- 17 Indemnity in medical research
- 18 The prevention and management of fraud and misconduct: the role of the LREC
- 19 Understanding clinical trials: a model for providing information to potential participants
- 20 The law relating to consent
- 21 Writing information for potential research participants
- 22 The law relating to confidentiality
- 23 Research involving vulnerable participants: some ethical issues
- 24 The ethics of research related to healthcare in developing countries
- Part II
- Index
Summary
Introduction: what is genetic research?
New scientific work in human genetics and the increasing use of large-scale genetic data bases may require new thinking about the ethics of genetic research. Genetic research covers both research on single gene disorders such as cystic fibrosis, and research into any genetic contribution to common multifactorial diseases such as heart disease, diabetes and the cancers. It also covers research into mental disorders such as schizophrenia, into behavioural differences such as learning disabilities, personality or behavioural traits and the genetic variations responsible for differential response to drugs (the basis for pharmacogenetics). Genetic research also includes gene therapy trials. For the purpose of this chapter, non-human genetic research such as research on plants or animals will not be covered.
There has been a debate about the extent to which genetics and genetic research raise distinctive ethical issues. Some writers argue for forms of genetic exceptionalism. They have pointed out that genetic information about an individual has implications for their blood relatives, that it is predictive and that it may be obtained before any symptoms of a disorder are apparent. Others think that genetics does not raise ethical issues that are wholly distinctive, although it raises issues that may be different in degree.
The ethical issues most often discussed in relation to genetic research are that:
genetic research could lead to discrimination against and stigmatisation of individuals and populations, and be misused to promote racism or for eugenic purposes
patenting and commercialisation may hamper access to genetic discoveries for research and medical purposes
the importance of genetic causes of social and other human problems may be exaggerated
[…]
- Type
- Chapter
- Information
- Manual for Research Ethics CommitteesCentre of Medical Law and Ethics, King's College London, pp. 57 - 59Publisher: Cambridge University PressPrint publication year: 2003