Human Eugenics and the Upgrading

 

 

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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|

               

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