Ethical Implications of Application
The next two
posts identify some of the weightier ethical issues arising from the
application of biohacks to humans – the detection and cure of disease. There
are about 5,000 different inborn diseases which are due to genetic mutations.
It is speculated that we all carry at least one lethal gene, but fortunately
most of our genes come in pairs and usually both members of the pair need to be
defective for a disease to develop.
Genetic
Screening
The earliest
immediate practical application of the genome tinkering is likely to be an
increase in the number of tests available for screening defective genes. But as
Jesus asked the cripple at the Pool at Bethesda…
"Now a
certain man was there who had an infirmity thirty-eight years. When Jesus saw him lying there, and knew that
he already had been in that condition a long time, He said to him, “Do you want
to be made well?” John 5:5-6
Do you want
to be made well? That is a really heavy question that warrants deep examination
both theologically and ethically.
Mass
screening has usually been counterproductive, unless a population has a very
high prevalence of a defective gene. More usually screening is carried out for
families where a risk of genetic disease is already established. Different
ethical issues are raised depending on whether screening is prenatal or
postnatal.
Prenatal
screening of fetuses via Amniocentesis can involve abortion, a thorny question
about which Christians have disagreements with the culture and even their own
brethren. Prenatal screening does not necessarily depend on genetic engineering
and has been carried out since the 1970s. Typically it is offered to a pregnant
mother in cases where both parents are known to be heterozygous (‘carriers’)
for a specific lethal genetic disease. This means that any child born in that
family has a 1 in 4 chance of being affected by that disease. Tests are carried
out using a tiny sample of cells obtained from the fetus. If the fetus is found
to carry disease, then the pregnancy may be terminated. Such terminations
comprise less than 3 per cent of abortions performed annually. Although I am
not going to argue the abortion issue, I needed to raise the topic of
Amniocentesis and similar screenings. Should they be done?
Ethical
issues are also raised by preimplantation diagnosis (PD). As with other forms
of prenatal diagnosis, this procedure is usually carried out when both parents
are known carriers of a lethal disease. PD involves in-vitro fertilization
(IVF)[9] followed by growth of the embryo to the stage at which it contains 4-8
cells. One or two cells can then be removed without damaging the embryo, and
defective genes identified. Clearly defective embryos are discarded and only
the healthy embryo is implanted in the mother. Only a few hundred PDs have been
carried out so far, but this number is likely to increase markedly as more DNA
tests become available.
The
procedure has the great advantage that it avoids the need for aborting an
affected fetus post-implantation, as required by current prenatal diagnostic
procedures. In assessing the ethical implications involved, it should also be
kept in mind that more than 80 per cent of all embryos fail to implant
following IVF or natural fertilization. Some of these embryos demonstrate
severe chromosomal abnormalities, apparently ‘nature’s way’ of preventing the
birth of children carrying genetic defects. It could therefore be argued that
in PD, human intervention is merely refining this natural process of viable
embryo selection.
Postnatal
screening raises rather different issues. Where prevention or treatment of diseases
is possible, there seems every reason to proceed. Every baby born in the UK, as
in many other countries, is screened for the genetic disease phenylketonuria.
If untreated this disease results in severe mental retardation, but once
detected is easily prevented by minor dietary adjustments. This is a good
example of a genetic outcome being radically altered by a small change of
environment. Knowing that defective genes are present can enable affected
individuals to change diet and lifestyle in attempts to counteract their
effects. Is this unbiblical?
Where no
treatment is available, different issues arise. Receiving general information
about the genetic basis for human disease is very different from the momentous
implications of hearing that you personally carry a defective gene. For
example, Huntington’s Disease develops in people aged 40 to 50. After some
years of increasing loss of motor control, death occurs 10-15 years after the
first onset of symptoms. A DNA test can now tell a person at risk that they
carry the defective gene. Some might conclude that such information is too
heavy a load for anyone to bear. However, Christians in particular might view
the situation differently. Knowledge that one is under a death sentence by
carrying a lethal gene could enable a choice not to have children and the
pursuit of a different life path. Utilize their remaining time in pursuit of
spreading the Gospel perhaps??
In postnatal
screening two urgent ethical issues arise. First, screening may lead to people
having information about their lives about which they can do nothing. The right
NOT to know one’s genetic errors is as important sometimes as the right to
know. Second, screening may create an inferior subhuman classification of
carriers of deleterious genes. A form of diagnostic eugenics. Those who are
carriers are then marginalized from the benefits of society. They likely
wouldn’t be able to obtain mortgages or life insurance. Christians though, will
need to view all people as having equal value, irrespective of their genetic
inheritance, and should press for insurance practices which allow the equitable
pooling of risk.
Regardless,
some should be allowed to choose to do nothing or know nothing. Purposely chose
genetic ignorance. By not choosing, they chose anyway. To answer Jesus’
question, “Do you wished to be healed?”
Some
people's answer will be no.
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