2 - Me, myself, I – against narcissism in the governance of genetic information

Summary

In John Smith's family there is a history of sudden cardiac death and he has recently read in the newspapers that there is now a test for a genetic mutation that predisposes people to sudden cardiac death. After reading the newspaper article and ‘Googling’ the test on the internet, John decides that he would like to have the test and goes to his doctor. His doctor refers him to the genetic services and after appropriate counselling he has the test and is given the result with post-test counselling and information about what it means and what his options are. The result is also, like many other pieces of health information generated as part of medical practice, recorded in John's medical notes for future reference.

This brief story is prima facie completely unexceptional and similar genetic testing takes place many times every day in countries across the world. What is exceptional, however, is that there is still ethical discussion concerning whether John Smith should be allowed to control the use of the test result after it has been produced. In this chapter I want to consider two areas of ethical contention related to the control of the test result:

1. (i) Whether John Smith's family have a legitimate claim to control the use of the test result?

2. (ii) Whether the state or society has a legitimate claim to the use of existing (i.e., already produced) genetic information in gene-epidemiological research or for other purposes?

These are not the only issues of control that arise in this situation.