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

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