Choosing Genes for Future Children: Chapter 5 - Law and Regulation

CHOOSING GENES FOR FUTURE CHILDREN, Chapter 5, Human Genome Research Project, 2006

144 Pages Posted: 3 May 2011

See all articles by Jeanne Snelling

Jeanne Snelling

University of Otago

Mark Henaghan

University of Otago; University of Otago

Date Written: August 1, 2006

Abstract

The assessment of legislative frameworks in this report is based on principles which are most likely to enable regulatory initiatives to be accepted by the general public as legitimate. These principles require that the regulatory framework must be proportionate to the perceived harms or risks posed to justify the imposition of regulatory limits. Regulators should have clear lines of accountability, in particular, their decisions must be justified and be subject to public scrutiny. There should be accessible, fair and effective complaints and appeals processes. Consistency in administering the regulation and in the regulation itself, and transparency in terms of what the regulatory objective is, and the legal obligations of those being regulated are essential. Finally, regulation must be precisely targeted to achieve its objective.

In comparison to other regimes with similar regulatory structures, New Zealand is unique in that the Human Assisted Reproductive Technology Act (HART Act) establishes two statutory bodies with clear remits. New Zealand has therefore departed from the international trend of having one statutory authority that both creates and implements policy. Instead there are two bodies: an advisory committee which creates policy, and an ethics committee which assesses individual cases against the advisory committee’s guidelines. The main benefit of this structure is that focusing solely on policy increases the efficiency of the Advisory Committee’s policy-making process, both in terms of time and the expertise of those creating policy.

New Zealand is different from the jurisdictions used here as comparators in that it has essentially de-regulated some aspects of assisted reproduction. There is little doubt that the HART Act 2004 was a necessary legislative initiative. The framework sets up affordable, efficient and responsive processes, and is supported in terms of health and safety aspects by other health law instruments. New Zealand is renowned for its thorough investigation of issues surrounding the implementation of novel technologies as was seen in the Royal Commission of Inquiry into Genetic Modification. There is, however, a comparative dearth of research investigating issues surrounding individual perceptions, experiences, and attitudes relating to new human assisted reproductive technologies. Caution should be exercised before directly applying the findings or knowledge arising from research investigating public groups overseas to the New Zealand situation.

The creation of fair and relevant criteria with which to evaluate public views is extremely difficult and has in the past resulted in the marginalising of relevant groups, such as children and people with disabilities. This, coupled with the consultation requirement built into the HART Act, highlights the importance of specific social and ethical research into assisted reproduction in New Zealand. Such research will greatly enhance the level of ethical debate and also the value and durability of policy and legislation in these areas.

When there are strongly held positions on either side of a debate such as there is on preimplantation genetic diagnosis (PGD), a common situation in a democracy is to go with the majority view. However, the meaning of democracy needs refinement and the following comment from H.L.A. Hart, the Oxford legal philosopher, gives us pause for reflection:

“It seems feasibly easy to believe that democratic principles entails acceptance of what may be termed moral populism: the view that the majority have a moral right to dictate how all should live…The central mistake is a failure to distinguish the acceptable principle that political power is best entrusted to the majority from the unacceptable claim that what the majority do with that power is beyond criticism and must never be resisted. No one can be a democrat who does not accept the first of these, but no democrat need accept the second”.

At present, PGD has the most dramatic impact on a small minority of families. Their voices and concerns can easily be lost. This report critiques majority positions which unjustifiably or inconsistently erode family choices.

Keywords: Preimplantation Genetic Diagnosis, Law, Genetics, Ethics, Human Genome, Genes, Enhancement, Prenatal Testing

Suggested Citation

Snelling, Jeanne and Henaghan, Mark, Choosing Genes for Future Children: Chapter 5 - Law and Regulation (August 1, 2006). CHOOSING GENES FOR FUTURE CHILDREN, Chapter 5, Human Genome Research Project, 2006 . Available at SSRN: https://ssrn.com/abstract=1607444 or http://dx.doi.org/10.2139/ssrn.1607444

Jeanne Snelling

University of Otago ( email )

P.O. Box 56
Dunedin, Otago 9010
New Zealand
6434795093 (Phone)
6434798855 (Fax)

HOME PAGE: http://otago.ac.nz/law/genome

Mark Henaghan (Contact Author)

University of Otago ( email )

Faculty of Law
P.O. Box 56
Dunedin, 9054
New Zealand
64 3 479 5324 (Phone)
64 3 479 8855 (Fax)

HOME PAGE: http://otago.ac.nz/law/genome

University of Otago ( email )

PO Box 56
Dunedin North
Dunedin, 9016
New Zealand
6434798854 (Phone)
644798855 (Fax)

HOME PAGE: http://otago.ac.nz/law/genome

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