Chapter 3
GENETIC TECHNOLOGY AND GENETIC INFORMATION
Introduction
3.1 The developments in genetic technology raise a variety of ethical
and legal issues. Several countries are taking action to evaluate the
implications of the emerging technology and to formulate regulatory responses.
The issues relate to five main areas: health care, medical research, insurance,
employment and forensic investigations.
3.2 This chapter outlines the nature of relevant developments in genetic
technology, and the special character of genetic information.
Nature of developments in genetic technology
3.3 Genetic tests are already available for a range of human diseases
arising from single gene abnormalities. There have been significant technological
developments regarding gene sequencing and testing equipment, which are
likely to make testing quicker and cheaper, with a wider spectrum of tests
available.
3.4 The committee notes that genetic technology offers a range of current
and future benefits in other areas also, including:
- benefits to animal health;
- increased efficiency in breeding animals and plants;
- increased resistance to diseases, pests and environmental extremes;
- improved production efficiency;
- improved quality of products; and
- potential benefits to the environment. [1]
Gene-mapping
3.5 The committee has also noted the existence of the Human Genome Project
(HGP), a 15 year international research effort to map and sequence the
approximately 3 billion nucleotide bases comprising the estimated 100,000
genes on human chromosomes, which is expected to be completed in 2003
[2]. In competition with the HGP, several private
research companies have also undertaken gene-mapping projects. This research
has the potential to revolutionise medical and health care, by assisting
scientists and researchers to understand how each gene functions and malfunctions,
thus triggering illnesses and diseases, and to develop appropriate treatments
for such illnesses and diseases.
The special character of genetic information
3.6 A person's genetic make-up is fundamental to his or her identity.
It influences physical characteristics such as height and build. Theories
prevail about its alleged influences on psychological characteristics
such as intelligence; and even possibly on behavioural characteristics
such as alcoholism and criminality:
Every day particular genes are identified as playing a role in a particular
disease or life outcome or behavioural predisposition. But our genes
interact with each other and with our environment in ways which are
often extremely complicated and are so far well understood only in simple
cases. So information about our genetic make-up is often ambiguous information
about our likely experiences in the most important aspects of our lives.
No more sensitive personal information exists. [3]
3.7 Genetic information can be highly significant and differs from other
personal information in a number of respects [4]:
- It is potentially predictive, in that it can indicate a future tendency
or condition, possibly years ahead of any physical manifestations. The
combination of the “shock value” of such information and the
long period between the test and the development of the condition that
it predicts makes information from such tests exceedingly sensitive.
- Personal genetic information is information shared with relatives.
Thus information about a person's genes allows inferences to be drawn
about the genes of relatives and may infer future risks for such relatives.
- Some personal genetic information – especially information that
predicts the likely onset of health problems in the future – may
lead to discrimination against individuals on the basis of their genetic
make-up: the information may be misunderstood; its impact on a person's
capacities may be misinterpreted; the measures that can be used to work
around a genetic condition or predisposition may not be known, or may
be ignored or written off as too difficult.
- Most personal genetic information deals in probabilities, not certainties.
While some tests provide high levels of certainty, most only provide
information about the probability that an individual will develop
a particular condition.
- Genetic testing may do no more than identify one factor of many that
play a part in the existence of a condition. For a condition with complex
causation, there may be no well-specified model of the factors that
influence its development so there is no certainty of the extent to
which the possession of a particular gene increases the risk of developing
that condition.
- Genes are with an individual for life. While some changes in genetic
structure can occur in the course of a person's life, this does not
amount to a rewriting of an individual's genetic constitution. Thus
judgments made about an individual on the basis of his or her genetic
information are unlikely to be revised.
- Any biological sample at all, apart from sex cells, taken at any time
can yield the full complement of genetic information about a person.
A single sample of any biological material can be analysed and reanalysed
as new tests are developed or as the aims of the sample controller change.
- Much of the science of genetic testing is new and continues to develop.
In such an environment, the significance of particular genetic testing
results may be uncertain as a result of inadequate methodology; insufficient
training of test providers; or misinterpretation of test results by
users.
3.8 These issues give rise to concerns about access to genetic information
and the uses to which it may be put.
Footnotes
[1] See House of Representatives Standing Committee
on Industry, Science and Technology Report, Gene manipulation: The
threat or the glory?, February 1992, Chapter 3.
[2] Submission No. 19, Research Group for the
Study of the Legal and Ethical Implications of Human Genetic Research
in Australia, Appendix 4 (Implications of the Human Genome Project for
Australian Insurance Law and Practice, Dr Margaret Otlowski), p. 4. See
also Racing to Map Our DNA, Time, 11 January 1999, pp. 26-32.
[3] Submission No. 40, Privacy Commissioner,
Human Rights and Equal Opportunity Commission, covering letter, p. 1.
[4] This information is extrapolated from Submission
No. 40, Privacy Commissioner, Human Rights and Equal Opportunity Commission,
p. 4.