Genetic information and ethics

6.12 As the Inquiry has progressed, the links suggested in IP 26 and DP 66 between ethics and genetic information have been confirmed and extended. In IP 26, it was suggested that these included the following aspects of genetic information:

• how it is obtained;
• what it reveals;
• about whom that information is revealed;
• the degrees of certainty and uncertainty of that information;
• who among those affected should know, and who should not know, some or all of that information;
• which third parties (such as employers, insurers or others) should know or not know;
• what constraints, if any, should limit what people can do with genetic information about others;
• what restrictions, if any, should apply to people because of the genetic information about them;
• what effect, if any, does self-awareness of genetic knowledge have on people; and
• what effect, if any, will widespread knowledge and use of genetic information have on the broader society?

6.13 This list could now be reduced to a simpler but more inclusive one. Who should be permitted to collect, use or disclose genetic information about a person or persons?

• from whom and to whom?
• for what purposes?
• with whose consent?
• in what manner?
• on what conditions?

6.14 These questions are, generally speaking, relevant whether the information is being collected in the form of family medical histories or genetic tests, and whether the purposes are related to research, health care, insurance, employment, parentage testing or law enforcement. They are questions of ethics because, as outlined above, the answers we would give are likely to express our views about what collection and use of genetic information would be acceptable to individuals and to Australian communities.

6.15 The characteristics of genetic information that give rise to difficulty in answering these questions were identified in Chapter 3. Genetic information is at once readily available and virtually ubiquitous. It is unique to an individual yet enables familial inferences to be made. From individuals, genetic inferences can be made about family members and from family histories, inferences can be made about individuals. Genetic information is often predictive, concerning probabilities rather than certainties.

6.16 These special characteristics have important consequences for ethics because they challenge established methods of structuring ethical justifications and compel re-examination of those methods. DP 66 explained this in the following way:

It is because genetic information has dramatic potential to change the ‘way of life’ of persons affected by it, and arguably even to alter our conception of the human ‘person’, that it raises ethical concerns. These concerns extend beyond the kind of moral dilemmas that may quickly be resolved by reference to pre-existing values, for several reasons.

First, some situations created by advances in genetic science and technology are unprecedented, except perhaps in the works of science fiction writers. As a community, we have yet to determine settled moral values and rules of conduct in relation to the novel possibilities opened up by the rapid development of this field of science. Consequently, the questions that arise in the course of this development call not merely for moral reflection, but for reflection upon morals. …

Second, human genetic information does not operate within discrete and stable parameters. It tends to spill out from the scientific and medical domains to affect a growing range of human activities and interests. It is not sufficient that this type of information be evaluated solely in terms of its scientific validity. Rather, it must be judged with respect to its impact on our shared ‘way of life’. Ethical inquiry aims to allow, and indeed foster, this kind of evaluation. It is centrally concerned with the kind of procedures or discussions that allow all relevant sources of information and viewpoints on a disputed matter to be taken into account in coming to a decision.

In this sense ethics is a rational and impartial activity, concerned to inform and justify decisions and actions. However, this does not imply that an ethical judgment will be a conclusive one. On the contrary, ethics is necessarily an ongoing activity, since our ‘way of life’ is continually developing. Nor does this emphasis on reason imply that ethical procedures seek to exclude or devalue emotion, but rather that they aim to place emotional responses (which are often based on strong moral commitments) in a framework in which they can be rationally assessed and balanced against all other relevant perspectives on an issue.^[6]