These advances have presented researchers and clinicians alike with new opportunities and challenges, but they have also unearthed previously undreamed of ethical, medical, legal and cultural issues - raising the question of whether, how and to what extent human genome-based technologies should be regulated.
There is no simple answer, but the University of Otago has taken a key leadership role in the New Zealand Law Foundation-funded Human Genome Research Project (HGRP), a three-year, full-scale, multidisciplinary, international investigation into how New Zealand should respond to emerging human genetic technologies.
Project leader and Law Faculty Dean Professor Mark Henaghan says their theme, Genes, Society and the Future, recognises that rapidly developing genetics research has outpaced medical, ethical, legal and cultural debates.
"We are now faced with complex legal, regulatory and ethical questions ranging from biotechnology and patents, to genetic screening, eugenics, human rights and indigenous populations," he says.
"As a country, we need to have a clear standpoint on these issues so we can take advantage of genetic advances while still taking into account public concerns, perceptions and beliefs."
The HGRP has recently released its second report - a 950-page, two-volume document covering the genetic testing of embryos, newborns, children and communities, and examines new testing technologies and their implications.
"The report shows that there is a lack of understanding in the community of the immense benefits genetic testing can bring to improving health outcomes," says Henaghan.
"Information that is obtained as a result of genetic testing has the potential to be misused or misunderstood," he says.
"Throughout this report, we provide legal and ethical frameworks to ensure that the potential for misuse of genetic information is avoided as much as possible.
"Overall, the benefits of genetic testing for the health of individuals and populations outweigh the potential harms, and we hope that the frameworks in this report will minimise the impact of those harms.
"For example, one of the report's key findings revolves around the way genetic tests could be incorporated into the current newborn-testing programme to look for susceptibility to common diseases such as type 1 diabetes.
Henaghan says screening children for such a disease could potentially enable parents to ensure an environment that is appropriate for a child with such a susceptibility.
"The major concern about widespread uses of such screening is that parents may overreact if they find out the child has a susceptibility to diabetes and overprotect the child," he says.
"Our own research, carried out for this report by Dr Nikki Kerruish, showed that the group of parents who knew their child had an increased risk of type 1 diabetes were, in fact, lowest on the anxiety scale in terms of how they related to their child.
"The report recommends that particular attention must be given to minimising risks to children and implementing procedures for obtaining informed consent for newborn screening.
The HGRP's first report, Choosing Genes for Future Children: Regulating Preimplantation Genetic Diagnosis (PGD), was released last year.
It devoted 350 pages to the debate and concluded the practice is medically safe.
Ethical, legal and regulatory issues surrounding its use were examined, and Mäori cultural perspectives were also addressed.
Henaghan says that, overall, the report found the current uses of PGD do more good than harm.
"We recommended that a system be put in place to monitor the health and social outcomes of the ongoing use of PGD.
"Work has already begun on the HGRP's next report, dealing with the effects of gene patents on health practice and research, genetic privacy and pharmacogenetics - the tailor-making of medicines to match a person's genetic make-up.
FUNDING
New Zealand Law Foundation