Foundation funds research examining "Designer Baby" issues
The Law Foundation is funding an important new study analysing the legal, ethical and social issues around human pre-implantation genetic testing.
Principal Researcher Dr Jeanne Snelling, of the Otago University Bioethics Centre, says whole genome analysis (WGA) is already being used to identify genetic contributors to complex diseases like cancer and neuro-psychiatric disorders.
Although there are still technical challenges around applying WGA testing to human embryos prior to transfer, those obstacles are likely to be overcome soon – potentially making it possible to identify non-disease traits like hair and eye colour.
These issues are not easily understood and highly emotive, so it is important to have well-researched information and a sound debate so New Zealand society can determine the right way forward. That’s why the Law Foundation is funding an important new study analysing the legal, ethical and social issues around human pre-implantation genetic testing.
“There’s been a significant leap in the science – it’s a leap that few people anticipated 25 years ago, when the technology began,” she says.
“It is by no means an over-statement to say that this type of testing, if incorporated into reproductive genetic medicine, promises to change the nature of conception. It would involve a conceptual shift from the current approach of choosing an embryo most likely to result in a successful pregnancy, to choosing the ‘best’ embryo based on a much wider set of criteria.”
The emerging technology raises complicated legal and ethical issues that have had little expert consideration to date, she says. They include the question of informed consent: how does this apply when an open-ended test of unknown relevance is being done, rather than testing for specific abnormalities as happens now?
Another issue concerns the right of the unborn child to preserve their own genetic autonomy – that is, the right not to know their own genetic information. Another question involves the clinician: is their legitimate role one of a gatekeeper of embryo selection, or a facilitator of informed decision-making by prospective parents?
“A lot of this is centres around managing a huge increase in information and the implications of that, such as incidental or secondary findings,” she says. “This is important horizon-scanning, to inform policies before the issues are upon us.”
Dr Snelling and Dr Nikki Kerruish, Senior Lecturer at the Bioethics Centre, will be principal researchers on the project, with expert advisor input from Otago’s Dean of Law Professor Mark Henaghan, clinical geneticist Professor Stephen Robertson and Bioethics Centre Director Professor John McMillan.
The research project is supported by the Advisory Committee on Assisted Reproductive Technology (ACART), an independent statutory expert body appointed by the Minister of Health.
The research team aims to report its findings in early 2016.
The New Zealand Law Foundation is providing funding of up to $80,0380 for this Otago University project.