The Royal Commission on Genetic Modification - submissions

Auckland Healthcare Services Limited

STRATEGIC ISSUES & OPTIONS A(1), B(b, B(h))

Submission

Auckland Healthcare Services Limited (AHS) observed that genetic advocacy includes the provision of the best possible information, services and health care to those with, or at risk of a genetic disorder. In the opinion of Associate Professor Ingrid Winthrop, it is not possible to undertake such an expectation in the absence of genetic modification. Furthermore, there is public demand for information about all the options an possibilities that GM and any other technology may offer. Patient autonomy and the ability to make informed choice will therefore be removed in the absence of GM technology.

AHS then stated that it is essential that the teaching offered by their staff is of an international standard and incorporates cutting edge technology. GM technology is integral to almost all branches of medical investigation and management in inherited and acquired disorders, both communicable and non-communicable. Furthermore, the ability to attract suitable, quality staff to undertake clinical teaching as well as the ability to attract students to medical faculties depends on the maintenance of progressive practise in health care. Lack of access to GM technology would therefore jeopardise medical teaching in New Zealand.

AHS submitted that patients would be at risk of receiving sub-optimal care. This is because DNA is easily transported and in the absence of the ability to offer testing in New Zealand, it is probable that overseas opportunities may be sought. AHS then noted that this, combined with easy access to information via the internet, could lead to stratified science with ‘mail order genetics’ in the absence of informed consent and counselling. Furthermore, in order to receive treatment patients would have to travel overseas either at their own expense, or at the expense of the public health system. New Zealand clinicians would also be required to travel overseas in order to learn about new therapies based on GM technology in order to provide their patients with accurate information.

RISKS & BENEFITS — SECTIONS B(a), B(b), B(c), B(j)

Submission

It was submitted by AHS that GM technology is the cornerstone of investigation of genetic disorders. This is because GM technology is used to confirm the presence or absence of a particular DNA mutation or chromosomal anomaly in an individual as well as providing treatment. Phases in which genetic testing and diagnosis are employed include:

Prenatal diagnosis for disorders such as cystic fibrosis;

Diagnostic confirmation of the manifestation of single gene disorders such as Fragile X syndrome;

Detection of silent carriers of single gene disorders. In autosomal recessive (for example cystic fibrosis) and X-linked recessive disorders (for example haemophilia), parents may carry one gene mutation for the disorder silently. These silent carriers may be at risk of having children affected by the disorder;

Predictive testing for disorders such as Huntington’s disease. This type of testing implies that the disorder will inevitably develop. Information allows affected individuals some certainty in making life decisions;

Predisposition testing for disorders such as familial colorectal cancer. Unlike predictive testing, the presence of a mutation implies susceptibility rather then inevitability;

Diagnosis and treatment of metabolic disorders. For example Gaucher disease, a progressive neurologic and liver disease caused by the accumulation of glucocerebrocides, can be treated by supplying the missing enzyme glucocerebrocidase. This enzyme is produced using GM technology;

Pre-implantation genetic diagnosis involving the removal of cells from an early embryo for the purpose of diagnosis. Embryos that are free of the genetic disorder are then implanted in the mother. This is not yet available in New Zealand but AHS noted increasing demand for its introduction;

Gene therapy. AHS observed that this technique was not yet used routinely. Early success in the treatment of conditions such as adenosine deaminase deficiency (ADA) have been noted however. This disorder causes sever immune dysfunction and is treated by taking bone marrow from the patient, inserting a gene for adenosine deaminase, and replacing the bone marrow into the patient.

AHS further submitted that good management of patients is underpinned by good diagnosis. Without GM technology the application listed above would not be accessible. This would compromise, therefore, the ability of health care professionals to manage their patients conditions effectively. Furthermore, GM material is immunologically and microbiologically safer. This is because the enzymes used in treatment are not derived from animal or human cadavers.

LAW & LEGISLATION — SECTIONS B(c), B(j)

Submission

AHS submitted that if the use of GM technology in medical sciences is restricted, New Zealand’s healthcare professional are unlikely to be able to fully comply with the Code of Health and Disability Services Consumer’s Rights. Specifically, the following rights are likely to be breached;

Right 4(1), the right to the provision of services with reasonable care and skill;

Right 4(4), the right to the provision of services in a manner that minimises potential harm and optimises quality of life.

Right 6, which provides among other things the right to information on the patients condition, and an explanation of all the options available;

Right 7, the right to exercise informed choice and consent;

Right 8, the right to refuse services and to withdraw consent for those services.

If access to GM technology was restricted or removed AHS, and many other health care service providers, would find it difficult to provide full and accurate information to consumers on their conditions and treatment. An inability to provide the information outlined in right 6 would inevitably result in a breach of rights 7 and 8. Questions would also be raised on whether AHS could provide services to the requisite standard of care as outline in right 4(1).

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