Alex Tang
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Medical Students /Paediatric notes
Human Eugenics and the Upgrading of the Human Blueprint
Dr Alex Tang
If you were given a choice to change your height, body built or general
intelligence, would you jump at the opportunity? How about a chance to avoid
diseases like diabetes and heart diseases which your parents are prone to? Or if
not for yourself, how about your children? You know that the world is a
competitive and difficult place to survive and you would like to give them all
the advantages to succeed. Maybe you are looking for a good tuition teacher to
supplement what they are learning in school. What if you could arrange for them
to have higher intelligence, better brain function and an excellent memory?
Would you do it even if it meant genetic manipulation? Would you subject your
unborn child to genetic tests so that he would be born without genetic
abnormalities? What if you knew that you were a carrier for Huntington’s Chorea,
a muscular disorder with no cure, or thalassemia, a blood disorder that needs
frequent blood transfusions or Tay Sachs disease, a metabolic disorder that
results in retarded growth and early death? These what-if questions may not be
abstract theory but real dilemmas by the middle of this century. Current
progress in genetic engineering should compel us to come to terms with what it
is to be a human being. How much change can we make to our body and mind before
we are considered no longer human? What does it mean that we are made in the
image of God? If we modify our body and mind, would we still be reflecting the
image of God? These are tough questions especially as we may soon have the means
to become more that what we are now. With new technologies, we may become
transhuman or post-human.
Transhuman
Transhuman comes from the term ‘transitory’ human. In the last decades, a few
scientists have coined the word ‘transhuman’ or ‘post-human’ to denote the
ability to develop or evolve our body from its present state to a new and better
state. This would be achieved through genetic manipulation, new lifestyles,
anti-ageing techniques, organ replacements, enhancement of our body with the
help of drugs, prosthesis, human-machine interface, nanotechnology, regenerative
medicine and new forms of medical treatments for diseases and degeneration of
organs due to aging. This may sound like science fiction but many of the new
technologies are already at their infancy stages of development.
One such technology is reprogenetics. This is a phrase coined by Dr. Silverman,
a Professor of Molecular Biology at Princeton University in his book, Remaking
Eden. With the present technologic of pre-implantation genetic screening, it is
possible to avoid having children with chromosomal or inheritable diseases. Dr.
Silverman postulated that this technology will have great ramifications and
enact social changes in the next two generations as inheritable diseases like
Tay Sachs disease, thalassemia, cystic fibrosis and Down’s Syndrome (a
chromosomal disorder) disappear from the general population. We have been trying
to eradicate certain diseases for many years. To date, we have succeeded in the
eradication of smallpox while for the last two decades, we have been trying to
eradicate poliomyelitis and hepatitis B. The technology we are using is
immunisation. These successes have changed our outlook. No longer do large
populations die from smallpox outbreaks and iron lungs, nor children limp with
deformed legs due to poliomyelitis. Within this decade, through immunisation of
all newborns in Malaysia and Singapore with hepatitis B vaccines, we expect to
stop the vertical transmission of the virus from mothers to babies. This in turn
will reduce the number of adult patients with hepatitis, liver failure and liver
cancer. However, we have not had much success against inheritable diseases. Once
a child is born with these diseases, there is often no curative but only
supportive treatment.
Trying to improve the stock of the human race or the ‘gene pool’ is not a new
idea. Plato suggested in his thesis, The Republic, that only ‘fit and healthy’
men should be allowed to have sexual intercourse as frequently as possible with
‘fit and healthy’ females in order to produce as many offspring as possible. The
republic (government) was to ensure that those who were not so ‘fit’ were not
allowed to reproduce. This same idea was also taken up by Sir Francis Galton,
cousin of Charles Darwin in 1865. Applying Darwin’s ‘survival of the fittest’
theory to human population, Galton suggested that the government should act to
ensure that only ‘good stock’ be allowed to reproduce. He called this
‘eugenics’.
The Modern Eugenic Movement
The modern eugenic movement was very influential in the first part of the
twentieth century especially in the USA, United Kingdom and Scandinavia, and
later in Germany. The intention was to ensure improvement of the human race by
retaining desirable traits and removing undesirable ones. Unfortunately, the
definition of ‘desirable traits’ is influenced by the cultural, social,
religious and political milieu of the period. Often desirable traits are used to
mean ‘healthy white people’. Positive eugenics aimed to encourage people with
positive traits to marry and produce many children. Negative eugenics involved
preventing people with undesirable traits from marrying and producing children.
The means by which this is accomplished is through forced sterilisation;
immigration control; segregation; infanticide; euthanasia of the elderly, sick,
mentally retarded, criminals, prostitutes and homosexuals.
Negative eugenics was carried to its extreme in Nazi Germany when attempts were
made to produce a pure Aryan race. Awards were given to ‘Aryan’ women to have
large families and a service was developed in which ‘racially pure’ women were
impregnated by SS officers (Lebensborn). Negative eugenics became the ‘racial
hygiene’ policy of the Nazi government. There was systematic elimination of
‘undesirables’ including Jews, gypsies and homosexuals in the Holocaust. They
also sterilised over 450,000 people in a decade. During the Nuremberg trials of
war criminals, some of them said they received their inspiration of mass
sterilisation from the USA. Between 1907 and 1963, over 64,000 individuals were
forcibly sterilised under eugenic legistration in the USA.
Forced sterilisations were carried out in some countries like Canada, Sweden,
Australia, Norway, Finland, Denmark, Estonia, Switzerland and Iceland until the
1970s. The idea of eugenics is not dead. It is still around, only in different
forms. In China, the 1994 Maternal and Infant Health Care Law Act mandate
pre-marital screening for ‘genetic diseases of serious nature’ and ‘mental
illnesses’ and uses coercion, threats, forcible abortions and infanticide to
achieve their policy. Canada, USA and Australia still have restricted
immigration policy that favours ‘whites’ over other races. Singapore has a
government matchmaking agency to encourage graduate single females to marry.
What should be the Christian response to all these? We must recognise the rights
of the individual which include the right to marry and have children
irrespective of race. The biblical mandate is for humans to go forth and
multiply. There was no restriction that only a certain people or race is allowed
to multiply.
Secondly, it is wrong to single out people with ‘desirable traits’ for survival
and deny the rest the right to live. We must again affirm the right and worth of
the individual. All human beings bear the image of God and have equal value. The
Bible has always affirmed the worth of the individual. Take the example of
Abraham, Moses, Elijah and Peter—God has always dealt with the individual. There
is no indication that any individual is worth more than others.
Thirdly, governments exist by the authority of God to protect and provide for
the sick and needy. These can be achieved through better and universal access to
healthcare services and preventive medicine. God does not condone a government
or society that kills off the sick, weak, criminal and homosexual just because
they are a drain on resources.
Finally, we must question the idea of a transhuman or post-human. No matter how
much modification we make to the human body, it is still a human body. The
definition of a human being is tripartite: body, spirit and soul. Changing or
modifying the body does not change the equation because the spirit and soul
remains constant. As God’s steward on earth, we are to take care of God’s
creation which includes our bodies. As stewards, we are also to take part in
God’s plan of redemption for his creation. This means that we must use whatever
means in our power to improve the life and health of our society. Advances in
science and technology have made this possible in ways we never dreamed of 50
years ago, while the coming years promise more changes. What we accept and
embrace must be guided by our respect for the sanctity of human life, the
mandate to protect the poor and helpless and the relief of pain and suffering.
Transgenic Humans
The Human Genome Project has tremendously increased knowledge of our human
makeup at the molecular level and our DNA. It was to the surprise of all
concerned that at the end of the project, it was discovered that there are only
30,000 genes that we humans use. These make up about two percent of the human
genome. The rest of the long chains of DNA are called ‘junk’ DNA because they do
not have any useful function. Equally surprising, 99 percent of the 30,000 genes
in human beings are similar to those of the rat. We may have a closer link to
the ‘rat race’ than we think. These 30,000 genes are activated or deactivated by
proteins and RNA. The growth of a human being and her subsequent development is
the result of activation and deactivation of certain genes for a certain period
until the requested manifestation of the genes has done its work. Scientists
have found that the activation and deactivation of the gene is a very complex
programme. However the insertion of certain protein or RNA interference (RNAi)
can activate or deactivate certain genes. In this way, they can study the effect
of these genes in animals like rats and pigs.
Another development is that scientists found that they can insert and
incorporate genes from one species to another to effect certain changes. Animals
with genes of another species are called transgenic animals. The insertion of a
human DNA gene into a cow may cause the cow to produce human transferrin. The
same procedure with a pig might yield human anti-clotting factors. In 2001, a
gene sequence from a jellyfish was incorporated into a Rhesus monkey named ANDi
(iDNA in reverse) proving that it is possible to be done in higher primates.
Most people would not have any ethical problems with human genes being
incorporated into animals because this could cheaply produce certain hormones or
factors which are of heath benefit to humans. Bacteria have been used to create
insulin for some time. Now clotting factors, transferrin and some hormones are
being obtained from these transgenic animals. Some organs from transgenic
animals are also suitable for transplantation. The heart and liver of pigs are
appropriate for use in humans.
But what if animal genes are incorporated into human beings? Would a human being
with animal genes become less than human? So far, research has not been done in
this area but it is a matter of time. Would we allow such research to take
place? Our knowledge of gene and gene interaction being still rudimentary, it
would be a good place to highlight the questions of control and limitations of
research and technology. Would we allow research and technology development to
proceed in any direction without consideration for moral and ethical values? Or
should there be some control over what is being done?
Some check and control over ‘pure science’ research should be in place at the
level of institutions or corporations that sponsor the research. The government
also has a role in monitoring and controlling types of research. In the United
Kingdom, the requirement for registration and other laws are used to direct
research along ethical guidelines. In the USA, restraint is by means of
government control over research funding. Unfortunately, there are some
countries which, for economic reasons, have allowed research without regulatory
controls. In such places, the church could act as the conscience of the people.
Professional self-regulation is also crucial in the control of research. One of
the unspoken rules of genetic research accepted by geneticists is that
experiments should only be done on the somatic or body cell lines
(non-reproducing) and never on the germ cell line (egg, sperm and stem cells).
The reason was that the germ cell line would lead to reproducing and
transmission of the trait onto the next generation, an area researchers do not
know enough to step into. This is a good example of peer professional monitoring
and control.
There is the case of a clinical trial of an aerosol delivery of a gene therapy
agent for cystic fibrosis. Cystic fibrosis is an inherited disease of the lung,
which leads to destruction of lung tissue. The aerosol delivered a protein that
deactivated the cystic fibrosis gene. When the clinical trial was planned, there
was fear of the protein affecting the germ line. So only male children were
recruited for the study. This led to a public outcry of discrimination resulting
in the research protocol being modified to include young women provided they
were on contraceptives.
Genetic Testing and Screening
Genetic testing has always been a moral minefield. Pregnant women who are able
35-year-olds are often advised by their doctors to have an amniocentesis done.
This procedure is to syringe out some amniotic fluid which are sent for
chromosomal analysis. Women who are 35 and above have a higher chance of
producing children with Down’s Syndrome, a chromosomal disorder involving
chromosome number 21. Amniocentesis is usually done about two to three months
into the pregnancy. The question facing Christians is what to do with the
results of the genetic testing. If it came back positive that the baby has a
chromosomal abnormality, would the couple abort the baby? That would go against
the ethical and moral standards we raised in the chapter on abortion. Would the
mother then go through the agony of carrying to term what she knows to be an
abnormal child? There is a need for counselling and informed consent in genetic
testing. Knowing may not necessarily be good. There are currently more than 900
genetic tests available.
A similar moral problem arises with genetic screening. Certain communities are
known to have higher incidences of certain conditions. The Africans have a
higher incidence of sickle cell anaemia, which paradoxically protects them from
malaria. Communities around the Mediterranean are prone to thalassemia while the
Jews are more likely to have Tay Sachs disease. The Nuffield Council of
Bioethics suggests that there is no point in doing screening unless there is a
cure for the disease. This is true in a certain sense.
Some communities have taken upon themselves to conduct and act on the screening.
In Cyprus, Orthodox priests require couples to be genetically tested before the
marriage ceremony. They will not be married if the tests show that their
children will be affected by thalassemia. In New York and Israel, an
ultra-orthodox organisation, Dor Yeshorim, requires every child at 16 be given a
test for Tay Sachs disease, the results of which will be put into a database.
Matchmakers will consult the database when making a match. If a couple are both
carriers of the Tay Sachs disease genes, the marriage will not be allowed to
take place.
Genetic screening does discriminate against certain individuals. The principle
here is the welfare of offspring of a marriage. The unborn children need to be
protected. It is not compassionate to produce children with thalassemia or Tay
Sachs disease and watch them suffer and die. The alternative is for these
couples to marry but not have children, and to undergo voluntary sterilisation.
Genetic screening is a double-edged sword.
Many medical professionals are also concerned about the reliability of genetic
testing, the difficulty in interpreting results and the possibility of
laboratory errors. In some diseases, it is not a single gene but other factors
as well that determine the manifestation of a disease. One example is
Alzheimer’s Disease (AD). AD is a complex disease characterised by deterioration
of mental function after the age of 70. Scientists believe that AD is caused by
a combination of gene and environmental factors. There are three different forms
(alleles) of a gene called ApoE which control the onset of AD. ApoE2 carries the
lowest risk of developing Ad while ApoE4 bears the highest. A gene test for
ApoE4 has been marketed since 1995 but the test is difficult to interpret
because there are AD patients without ApoE4. The non-specificity of the test can
lead to interpretations that may cause unnecessary anxiety, psychological trauma
as well as insurance and employment discrimination.
Control of Genetic Information
There are signs that certain governments may push through registration for
compulsory genetic screening. Apart from identifying carriers of diseases like
thalassemia, chromosomal disorders and Tay Sachs disease, genetic screening can
also detect diseases or disorders patients may suffer in the future. It may
reveal Huntington Chorea or spot higher-than-average risk for breast or colon
cancer, diabetes or heart disease. Such information though useful may however
have negative repercussions and raise some ethical questions.
First of all, privacy and confidentiality is an important issue. Whoever holds
this type of information about a person can make decisions that will affect him
in many ways. Who should have access to our genetic information? Should it be
the family, insurers, employers, courts, school, adoption agencies or the
military? How secure are these data? As we know, there is decreasing respect for
privacy in our society. As we surf the Internet and shop online, there are
programs that are collecting data on what our preferences are and profiling us.
When we apply for a credit card, open an account in the bank, join an
organisation or send an email, we are revealing a lot of personal information
which is collected and collaborated. One does want to know how secure is
information stored in a government database. Or how secure are our medical
records?
Secondly, should genetic screening be done only when there is a family history?
Should general population screening be carried out, such as screening all
newborns for genetic disorders? Should genetic screening be done when there is
no treatment available? If there were no cure for a certain condition, how would
a positive test be beneficial to the affected person? We may be doing the person
a disservice. One example is Huntington’s chorea. This is an adult-onset disease
which results in abnormal muscular movement and is crippling. There is no
treatment or cure. Do parents have a right to have children tested for
adult-onset diseases which have no cure?
Thirdly, how would knowledge of genetic test results affect employment? Would an
employer hire a person whom he knows will suffer from Huntington chorea in 10
years? Would a person who is at high risk of cancer be recruited? Employers have
to keep in mind their overheads while healthcare for staff and productivity are
important considerations.
Fourthly, insurance companies may not insure persons who are at high risk for
certain conditions. Insurance is a business where the bottom line is to make
profits which means collection of more premium payments and paying out fewer
claims. And insurance companies have access to medical records. Most people do
not realise that when they buy an insurance policy, they are actually giving
consent to insurance companies to access their confidential medical records. At
present, insurance companies are penalising people with known medical conditions
by excluding them from making claims involving these organs. For example, if you
have a history of asthma, the insurance company will sell you a policy that
excludes you from claiming for medical conditions that involve the nose, throat
and lungs. What would be the ramifications if they got to know that you are
genetically prone to certain diseases or cancer? Most genetic diseases are
hereditary so the insurance companies may not insure your family as well.
Fifthly, public policy and perception will also be affected by genetic tests.
For example, in Malaysia, there is a move towards a National Insurance Policy to
help relieve the government from the burden of subsiding healthcare. What will
the consequences be for people discovered to be at high risk for certain
diseases and disorders? What will the public perception be towards people who
will develop diseases like Huntington’s chorea, Alzheimer’s disease and Motor
Neurone disease?
Sixthly, there are personal and family issues. If a woman was detected to have a
high risk for breast cancer, would she share the information with her sisters
and make them anxious about their future? Or would she keep quiet but make sure
they go for regular breast checkups? If you were detected to be at high risk of
Alzheimer’s disease starting at an early age, how would that affect your life?
And that of your family? These are important personal questions that need to be
addressed when genetic screening is done.
Finally, ownership of genetic information. Suppose a doctor took a piece of
tumour from you and developed a cure for that cancer. He goes on to patent the
cure. Do you have a right to that patent as the genetic information from which
the cure was developed belonged to you? This may be an unusual example but the
issue of ownership of genetic information may arise in the near future.
Genetic Treatments
Medical treatment modalities have been moving at a tremendous pace in the last
few decades. Infectious diseases have been kept at bay with the discovery and
synthesis of antibiotics. Treatments for cancer have improved with survival
rates improving every year. New protocols have improved survival rates but often
at the cost of severe side effects to patients. So far, medical treatment is
like using a hammer to kill an ant. With the introduction of molecular medicine,
doctors are refining the treatment modalities to be more specific to the cause
of the condition, thus reducing the side effects of the treatment while
improving its efficacy.
Genes, which are part of the chromosomes are the software that encodes what the
physical makeup of our bodies will be. It is the mould that encodes the proteins
that make up the rest of the body. When the genes are altered, the encoded
protein is unable to carry out their function resulting in genetic diseases. One
example is Severe Combined Immunodeficiency Syndrome (SCID), which is inherited,
in which the gene of the offspring is unable to encode proteins to produce B and
T lymphocytes. B lymphocytes produce antibodies and T lymphocytes produce the
killer cells that destroy bacteria and viruses. Because the body cannot produce
antibodies and killer cells, it is easily infected by bacteria and viruses. SCID
children usually die early unless they live in a sterile environment.
Gene therapy is a technique of correcting defective genes. There are several
ways in which genes may be corrected. The commonest way is to insert a normal
gene into a non-specific location in the chromosome. This normal gene will start
taking over the function of the original defective gene. Other methods include
swapping the flawed gene for a normal gene though a recombinant technique, which
repairs the defective gene by selective reverse mutation and altering the
regulation of the impaired gene.
What is interesting about gene therapy is the way the normal gene is delivered
to the chromosomes of the defective genes in the cells. The cells with the
abnormal gene are called the target cells. It may be liver cells or lung cells.
The carrier of the normal genes is called a vector. In gene therapy, the
commonest vector used is viruses. Viruses reproduce by using the genetic
duplication mechanism of the infected cells. Once a virus infects a cell, it
incorporates its RNA or DNA into the victim cell’s DNA. Thus when the victim
starts duplicating its DNA, it is actually producing the virus’ DNA. Scientists
make use of this information in gene therapy where initially, the ‘normal gene’
is incorporated into the genome of the vector virus. Then the patient is
infected with this virus. The vector virus incorporates the ‘normal gene’ in the
genome of the target cells. When the target cells start duplicating, it will
duplicate its own DNA with the ‘normal gene’. The ‘normal gene’ then starts to
function thus restoring balance to the patient or curing the disease. The
commonest viruses used as vectors are retroviruses (the Human Immunodeficiency
Virus or HIV is a retrovirus), adenovirus (causes the common cold),
adeno-associated viruses and Herpes simplex viruses (causes cold sores).
Apart from using vector viruses to carry the normal genes, there are other
non-viral methods. One is to introduce the ‘normal gene’ directly into the
target cells. This is difficult because it can only be used in certain tissues
and needs large amounts of DNA. Another method is to use an artificial lipid
sphere (liposome) to carry the ‘normal gene’ to the target cells or to bind the
‘normal gene’ to the target cell receptors. The most ingenious way devised so
far is to create an artificial chromosome—47th chromosome (Normal humans have 46
chromosomes). This 47th chromosome is introduced into the target cells. The
problem is how to deliver such a large molecule into the target cells.
So far, gene therapy has not been approved for general use. Though promising,
little progress has been made since clinical trials began in 1990. In 1999, an
18-year-old patient who was suffering from ornithine transcarboxylase deficiency
(OTCD) died of multiple organ failure four days after starting gene therapy. His
death was believed to be due to a severe immune response to the adenovirus used
as the vector. This was a major blow to gene therapy studies. Another clinical
trial on using gene therapy to treat severe combined immunodeficiency disease (SCID)
was halted in 2002 when it was discovered that one of the patients developed
leukaemia. It was postulated that the ‘normal gene’ started overproduction of
lymphocytes that led to leukaemia.
There is still a tremendous amount of work to be done before gene therapy
becomes a standard form of treatment for genetic diseases. The body’s immune
response, the type of vector viruses used and the complexity of the genome are
some of the problems to be solved. In general, there is no ethical problem with
gene therapy except for the need of more animal trials before human clinical
studies. The ethical issue is more in the nature of a caution. The use of gene
therapy must only target body or soma cells but never germ line cells. There
must be sufficient safeguards that no germ line cells be infected or else, the
‘normal gene’ will be transmitted to subsequent generations. We do not have
enough information to guess what will be the consequences if that happened. It
may be nothing at all or it may be a genetic catastrophe.
Conclusion
In this article, we have documented advances in biotechnology that sound like
science fiction.. Humans have always wanted to improve on the design of the
human body. Today, we have the means to do that. Yet we must be aware of the
price that needs to be paid for every advance in science and technology. The
development of agricultural technology and husbandry has changed human society
from a nomadic to a communal existence. Industrialisation has given rise to
cities and consumerism. Humanity has lost its personal worth and became a cog in
the machine. The development of the information age has removed national
barriers and shrunk the world. Humanity has lost its uniqueness and become a
cluster of descriptors. What will humanity lose in the biotechnology era? Its
forms and shape? Or can humanity remain human? No doubt there are many benefits
of genetic engineering that will make our lives easier and more comfortable. We
must be alert to the dangers which modifications to body design and genetic
screening and engineering can pose to us personally and to society. Yet we must
not reject their obvious benefits. We need to be like the men of Issachar to be
able to discern the sign of the times.
Soli Deo Gloria
|posted 10 June 2006|
