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Guthrie test samples: is the problem solved?

Cordelia Thomas1

  • 1Massey University, Wellington Campus, New Zealand.

New Zealand Bioethics Journal
|December 16, 2004
PubMed
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Newborn blood samples in New Zealand are retained indefinitely. This paper questions child ownership of these samples and the adequacy of current health legislation to address these ethical and legal issues.

Area of Science:

  • Medical Law
  • Bioethics
  • Public Health Policy

Background:

  • New Zealand routinely collects newborn blood samples for screening.
  • These biological samples are retained indefinitely after collection.
  • Uncertainty exists regarding the legal and ethical status of these retained samples.

Purpose of the Study:

  • To examine the ownership rights of children concerning their retained newborn blood samples.
  • To evaluate the sufficiency of current legislative changes in New Zealand's health sector.
  • To address concerns regarding the role of ethics committees in decision-making for sample retention.

Main Methods:

  • Legal and policy analysis of relevant legislation.
  • Review of the Code of Health and Disability Services Consumers' Rights.
Keywords:
Biomedical and Behavioral ResearchGenetics and ReproductionLegal Approach

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  • Examination of ethical considerations in health data and sample retention.

    • Main Results:

    • Current legislation may not fully resolve the property and ethical issues surrounding retained newborn blood samples.
    • The delegation of decision-making to ethics committees raises concerns about accountability and clarity.
    • The legal standing of retained samples as belonging to the child requires further clarification.

    Conclusions:

    • There is a need for clearer legal frameworks defining ownership of newborn blood samples.
    • The adequacy of the Health (National Cervical Screening Programme) Amendment Bill and the 1996 Code requires critical assessment.
    • Ethical oversight mechanisms for retained biological samples need robust evaluation.