The importance of human genetic research

We all share the basic human genome, although there are individual variations which distinguish us from other people. … This sharing of our genetic constitution not only gives rise to opportunities to help others but it also highlights our common interest in the fruits of medically-based genetic research.[11]

13.10 The 1999 Wills Report, which resulted from a major strategic review of health and medical research in Australia, referred to the need to take advantage of advances in biotechnology to improve the health of the Australian population, to build the economy and to create jobs.[12]

13.11 Human genetic research generates knowledge with the potential to improve individual and community health. Research can also reveal information about an individual’s susceptibility to disease and hence about the individual’s future health. Such information may be of interest and benefit to research participants especially if preventive strategies exist.[13]

13.12 The completion of the first mapping of the human genome under the Human Genome Project has opened huge potential for research into the ways in which genes relate to human conditions, capacities, diseases, impairments and susceptibilities. The scope of genetic research may be illustrated by reference to the current activities of just one major Australian genetic research organisation. The Murdoch Childrens Research Institute is conducting research into, among other things, the underlying genetic causes of neuromuscular disorders, inherited hearing loss, attention deficit hyperactivity disorder, cancers, ataxias and addiction.[14]

13.13 Although exact figures are not available, it is likely that human genetic research will become an increasingly important component of medical research generally. One indication of this is that clinical trials of new drugs increasingly include genetic sub-studies.[15] It has long been known that drug toxicity and efficacy have a genetic component[16] and these sub-studies are intended to investigate genetic causes of individual variations in clinical response to drugs.

[11] Human Genetics Commission, Inside Information: Balancing Interests in the Use of Personal Genetic Data (2002), London, 38.

[12] Health and Medical Research Strategic Review, The Virtuous Cycle, Working Together for Health and Medical Research (1999), Commonwealth of Australia, Canberra, 1.

[13] Australian Law Reform Commission and Australian Health Ethics Committee, Protection of Human Genetic Information, IP 26 (2001), ALRC, Sydney [6.5].

[14] Murdoch Children’s Research Institute, Gene Identification and Expression, <www.murdoch.rch.>, 25 June 2002.

[15] One estimate is that approximately one in five clinical trials have an associated genetic sub-study and this proportion is increasing: HREC Chairs and Officers, Consultation, Sydney, 20 June 2002.

[16] Advisory Committee on Health Research, Genomics and World Health (2002), World Health Organization, Geneva, 71.