Education in ethics

6.56 Submissions to the Inquiry emphasised the need for educational measures to ensure that decisions relating to genetic information are informed by ethical dimensions.[38] At least two types of education are seen to be needed: specialised training and advice for those with public or professional responsibilities in relation to genetic information; and public education to inform and equip citizens for engagement in ethical discussion, debate and decision making about their genetic information.

6.57 Specific educational programs will be required to equip those handling genetic information in a professional capacity to keep pace with the ethical significance of developments in the area of genetics. The Australian Academy of Science recommended that professional training in ethics should be included in all medical science and allied health training programs at undergraduate and postgraduate level.[39] The AMA made a similar call for training in ethical issues for research workers and members of ethics committees.[40]

6.58 A key group who requires specialised education in ethics is the individuals and families who are directly affected by genetically-related disease. Their interest and experience in the area also mean that their perspectives and insights into the ethical dilemmas posed by genetic information should be given particular weight in official and public discussions or deliberations on this topic, in a specific application of narrative ethics.[41]

6.59 Many submissions recognised the role of public perceptions, especially those that are uninformed, in determining the social significance and effects of genetic information.[42] They identified the need to establish and maintain a healthy culture of discussion and debate, involving effective exchange between all interested parties on ethical issues relating to genetic information, a role that the Ethical, Legal and Social Implications Committee of the HGCA could play.

[38] C Nagle, Submission G196, 26 November 2002; Office of the Federal Privacy Commissioner, Submission G294, 6 January 2003; Australian Biospecimen Network, Submission G238, 19 December 2002.

[39] Australian Academy of Science, Submission G097, 21 January 2002.

[40] Australian Medical Association, Submission G091, 29 January 2002.

[41] UnitingCare NSW & ACT, Submission G052, 14 January 2002.

[42] ACROD Limited, Submission G239, 19 December 2002; C Nagle, Submission G196, 26 November 2002; Department of Human Services South Australia, Submission G288, 23 December 2002; Office of the Federal Privacy Commissioner, Submission G294, 6 January 2003.