Chapter 6

  Social and Ethical Implications

The Department of Energy and the National Institutes of Health have allocated 3-5%, which is around £120 million dollars of their budget to study, analyse and address the ethical, legal and social implications surrounding the availability of the genetic information. These informations arise in speeding pace as the Human Genome Project reaches its destination. The DOE and NIH also created the NIH-DOE ELSI working group, which has a wide and diverse spectrum of experts, including Molecular Biologists, Medical Geneticists, Law experts, Ethical professors, Theologians and consumers to explore and consider options for the development of sound professional and public policies related to the implications of the Human Genome Project. “This endeavour represents the largest bioethics programme in the world”.

The general interest of the public in Human Genome project is directed primarily towards serious genetic disorders within families or among friends. Nevertheless it is now clear that genes are responsible for many other conditions. Cancer for example, in most cases originated from cancer-causing genes, collectively called “Oncogenes”. Also numbers of other complex traits, such as Alzheimer and other psychiatric disorders have genetic components. Recent studies confirm that chromosome 21 had a gene or genes responsible for certain Alzheimer’s cases.

To discuss these important issues, the following topics will be covered in further details :

1- Historical and Political background to Human Genome

2-  Privacy, Confidentiality and fairness in dealing with genetic information

3- Reproductive implications

4- Psychological implications

5- Philosophical and conceptual implications

6- Bioethical and Islamic View

6.1. Historical and Political Background to Human Genome

Large number of people from scientific and non scientific circles are very concerned with the developments in genetic sciences and are afraid of the memory of eugenic movements in Nazi Germany, rest of Europe and United State during the first half of last Century. If the development in modern knowledge of Human Genome is aimed to benefit Human being rather than harm them, there must be an awareness and understanding of the lessons of history among the scientific circles and society at large. Those lessons of Eugenics movement, which used some, distorted scientific data to justify its ideology and inflicted misery among wide spectrum of people across the civilised world!

6.1.1. Eugenics Movement :

The word Eugenic taken from a Greek meaning, “noble in heredity”, first used and refined by Francis Galton in 1883. Francis was the first cousin of Charles Darwin and was fascinated by his theory of Evolution in his famous book “origin of species”, which many scholars acknowledged its influence on Galton’s theory of Eugenics. This theory proposed that Human race could be improved in the same manner as plants and animals breeding. The improvement of Human race is possible through controlled selective breeding of individuals having desirable characteristics. By doing so, Galton’s intention was to improve Human race by multiplying the desirable and getting rid of undesirable characteristics. Francis who founded the Eugenic society was born into a wealthy Victorian family of gun makers and bankers, with racist views and usually imposed his imagined superiority on all who had the misfortune to meet him, in particular black Africans (Jenkins, 1998).

The idea of selecting and breeding Human race goes back to the time of Plato 427 BC, when he proposed to breed gifted women to gifted men for the production of healthy race!!. Aristotle’s politics in 384 BC advocated the abortion and killing of the handicapped.

After 2000 years of civilisation, the racial attitude of certain minds, which were considered the best of its time, had not changed. Socialist play writer George Bernard Shaw (1856-1950), towards the end of his life wrote, “If we desire a certain type of civilisation, we must exterminate the sort of people who do not fit into it… Extermination must be put on a scientific basis if it is ever to be carried out humanely and apologetically as well as thoroughly”, (Garvin, et al 1995).

The work of Professor Pearson of Galton Eugenic Research Laboratory at University college London, as well as the works of Charles Davenport of Carnegie Institution of Washington, who had been influenced by Galton’s work, had fuel the extreme racial views at that time in Europe and United states. The works of those scientists and others alike, were influenced to great extent by preconceived idea resulted in falsifying data regarding the biological bases of intelligent and criminality (Kevles, 1985). Davenport and his associates’ works, which appeared in his comprehensive 1911 book, Heredity in relation to Eugenics, and in later publications, concluded that the traits must be biologically inheritable. He attempted to fit the pattern of inheritance into a Mendelian frame. He argued that patterns of inheritance were evident in insanity, epilepsy, alcoholism and criminality. The mental and behavioural characteristics of different races were a major concern for Davenport, who, like eugenic scientist elsewhere, held different national groups and “Hebrews” to represent biologically different races and to express different racial traits (Kevles and Hood, 2000). Whereas the finding of Human Genome project revealed that Human being are 99.9% similar in their genetic materials and quite possible to find an African person more similar biologically to European than to his native African!. The scientific data produced by these two laboratories were used extensively to its extreme limits by eugenic movements to justify their racial and ill-thinking motives. In addition, these data also influenced world leader and decision-makers to institutionalise the eugenic science. The followings are few examples of this extreme attitude :

* Carl Brigham, an American Psychologist, published an analysis of huge amount of data in a book in 1923, the name of the book was “A study of American Intelligence”. In this book Carl concluded that Alpine and Mediterranean races were intellectually inferior to the representatives of the Nordic race, and that black American were much less intelligent than the white American (Russo and Cove, 1995). This book gave the “scientific” basis for the introduction in 1924 to US law of an Immigration Act to restrict immigration. As a congressman said “The primary reason for the restriction of the alien stream … is the necessity for purifying and keeping pure the blood of America”. The American president who signed the law, Calvin Coolidge said when he was vice-president “America must be kept American. Biological laws show … that Nordics deteriorate when mixed with other races”, (Russo and Cove, 1995). The works of Davenport, who claimed that many social problems, alcoholism, criminality and mental problems were inherited traits, were behind the sterilisation law in Indiana in 1907. Davenport claimed that there must be bad genes behind these traits, and if we wanted a future without criminals, the criminals must be prevented from procreation. The solution therefore is sterilisation. One of the wide-ranging sterilisation laws was passed in Iowa in 1911 (Russo and Cove, 1995).

* Adolf Hitler, in his fascination with Aryan race, which he believed is the best race said, “It is outstandingly evident from history that when the Aryan has mixed his blood with that of inferior peoples the results of mixed breeding has invariably been the ruin of the civilising race”. In the year he was elected in 1933, a eugenic sterilisation law was passed and was only the beginning of the Nazi programme.

Hitler description of Aryan is tall, slim, and blond with blue eyes, athletic and intellect with leadership qualities. He considered these qualities as a pure breed and should not mixed with other qualities! When a Black American athlete won 4-gold medals in 1936 Olympic games in Berlin, Hitler refused to present him with the Medals, and this incidence turned his ideology of Eugenics into total nonsense. These extreme views of Nazi eugenic movement were supported and encouraged by Hitler’s regime, who passed the radical racial hygiene law in 1933, and by 1945 about 2 million young Germans had been forcibly sterilised most between 15-17 years old (Burleigh and Wipperman, 1991).

* Winston-Spencer Churchill, in 1910 when he was home secretary said, “The unnatural and increasingly rapid growth of the feeble-minded and insane classes constitutes a national and race danger, which is impossible to exaggerate. I feel that the source from which the stream of madness is fed should be cut off and sealed off before another year is past”. Churchill’s comments were considered so outrageous, especially in the light of subsequent events, that they were not made public until 1992 (Garvin, et al 1995). Sterilisation was fiercely opposed in Britain, and requires parental consent, despite a lot of enthusiasm expressed from other sectors in the society. Sterilisation appears to be much less frequent than in other European countries, and instead  family planning through contraception was advocated.

* Swedish newspaper has revealed that over 60000 people were forcibly sterilised in Sweden between 1932 and 1976, for eugenic reasons. Sterilisation was performed legally under the 1926 eugenics law, and the programme was a matter of public records. It has also been revealed that there were widespread compulsory sterilisation programmes in Finland, Norway and some Swiss cantons. In Austria it appears that the practice is still continuing (GenEthics, 17, 1997). Finland sterilised 9000 people and Norway 2000. It has been reported that 15000 women have been illegally sterilised in France. In Japan 16000 women were sterilised between 1949 and 1995, under the eugenic protection Act of 1947. In Austria, sterilisation of mental patients is still legally permitted, and although there are no clear statistics, the Green Party alleges that 70% of women with learning difficulties have been operated upon. The practice also appears to be continuing in Switzerland (GenEthics, 19, 1997).

* China’s Law in 1995 on maternal and health care has been widely viewed as eugenic. The law has been stipulated that where a serious genetic disease affects one member of a couple, the couple may not marry unless they agree to sterilisation or long term contraception. Another part of the law says that where a foetus is diagnosed with a genetic disease, the couple must follow the doctor’s advice (GenEthics, 25, 1998).

There are two forms of eugenics : positive eugenics and negative eugenics. Positive eugenic, means manipulating Human genetic materials for the purpose of enhancement of the Human potentials to produce superior people, as recently stated by the president of the International Association of Bioethics (IAB), Hyakudai Sakamoto of Nihon University. He claimed that in Asia, there is no fixed distinction between the natural and the artificial, and that in Buddhist though, everything is constantly changing. Therefore genetic engineering should be used for what he called the “artificial evolution” of Human kind”! (GenEthics, 17, 1997). On the other hand negative eugenics, Implied the elimination of the biologically inferior people either by sterilisation laws or preventing others through immigration laws.

It is quite frightening, and the society has the legitimate concerns with regards to rapid development in what people currently refer to as genetic era. If scientists like Davenport and Galton who were so arrogant and knew little scientific self-doubt, reappear again, armed with this real powerful knowledge. It might be possible that they would recommend the application of their scientific knowledge to the social problems and offered their expertise to policy makers to pass a range of laws like those of Eugenics time. It is worth remembering in this instance a recent scientist of such arrogant mentality. Professor Richard Seed, an American physicist and researcher in embryology who intended to open 10-20 cloning clinics in America and up to six overseas. His proposal was greeted with horror around the world and Clinton administration called for legislation to ban professor Seed’s work. When he was confronted with a question that his proposal was unethical in a radio interview, he claimed that there was a “moral imperative” to proceed; God made man in his own image. God intended for man to become one with God, we are going to have almost as much knowledge and almost as much power as God. This sort of mentality is quite frightening if not controlled!

The new era of genetic with the completion of deciphering Human Genome, may guide us into new form of eugenic. The ability to select and grade Human embryo, brought about by the alliance of medically assisted procreation (MAP) with the diagnostic genetics, has created entirely new conditions in the quality control of children. It enables parents and doctors to refuse the low-grade handicaps that used to be tolerated in conventional antenatal diagnosis (AND) screening (which I will explain in further details later on). The same diagnosis reached by (AND) requires more circumspection than one made by preimplantation diagnosis (PID) (which again will be discussed later) in a newly fertilised embryo. AND involve a single foetus, which the parents already think of as their baby, whereas PID is based on a multiplicity of eggs carrying relatively low emotional weight and as yet isolated from the mother’s body. Embryo multiplicity is the cornerstone of a successful MAP programme and the motor of the new eugenics : In AND the worst was weeded out; in PID the best in planted in (Testart, 1995).

6.2. Privacy, Confidentiality and Fairness in Dealing with Genetic Information :

The most critical issue of social implications of the Human Genome is the privacy, confidentiality and the fairness in the use of the genetic information.

Rothstein of the University of Houston, Law centre define “Privacy” as the limited access to a person, the right to be alone, and the right to keep certain information from disclosure to other individuals.

Confidentiality, on the other hand, is the right of an individual to prevent the redisclosure of certain sensitive information that was originally disclosed in the confines of a confidential relationship. Protecting confidentiality can be difficult because others think they should have the right to see an individual’s information (Rothstein, 1999). In Hippocratic oath, first mentioned the “duty of confidentiality”. The need to maintain the confidentiality is considered as an ethical obligation in the relationship between the patient and his doctor. This obligation facilitates the openness and frank communication between the two parties. This help immensely in the diagnosis and treatment of the patient. The patient is reassured that his dialogue with his doctor would remain confidential and any documented information would remain secret. This is in legal term, may be considered as an aspect of patient’s right to privacy (Weiss, 1998).  According to American Society of Human Genetics, genetic information is medical information and as such is entitled to confidentiality  (NHGRI, 1998).

The growing number and use of genetic tests has many worried about discrimination due to inappropriate access to, and use of, private genetic information. A Gallup poll by the institute for Health Freedom released in September 2000 revealed that 86% of US adults believe that physicians should obtain permission before doing any genetic testing beyond routine testing. Similarly, 93% of adults believe that their permission should be granted before researchers use their genetic information (Jefford and Daschle, 2001).

People who advocate that genetic information should not be disclosed, point out to the historical abuses by Eugenic movement, in particular the Nazi Germany, where sterilisation were carried out in large scale as we discussed earlier.

The National Human Genome Research Institute (NHGRI) made the following observation in 1997 in one of its fact sheet: Each of us probably has 5-50 genetic mutations that place us at risk for some diseases. As genetic information accumulate more and more of us will be classified as carriers of genetic information that predispose us to disease. With the help of the progress in genetic research and the completion of Human Genome Project, diagnostic, preventive and treatment of the diseases will be easier, and will be of great benefit for the well being of humanity. But the fear of the misuse of this information will be the big hurdle to advancement of genetic research and a roadblock to reaping the benefit. People may be unwilling to participate in research and to share information about their genetic status with their health providers or family members because of concern about misuse of this information (Hudson, et al., 1995). The misuse of genetic information to exclude high-risk people from health care by denying coverage or charging prohibitive rates will limit or nullify the expected benefits of genetic research. Genetic screening may create a class of people that labelled as unemployable and /or uninsurable.

Unless safeguards are established, we all run the risk of being victims of genetic discriminations on various levels, employment, insurance, ethnicity, education, courts, military and many others. American president Clinton acknowledged the benefits of the Human Genome project, but warns against the misuse of genetic information, in his announcement in 1997 for the support of legislation to provide comprehensive solution to the problem of genetic discrimination. He said, “Genetic discrimination is more than wrong. It is a life -threatening abuse of a potentially life-saving discovery”.

In order not to go in further details I will discuss the issue of privacy, confidentiality and fairness form three angles :

6.2.1. Doctor-patient relationship :

It is proved to be difficult for doctors to draw a clear line between their patient’s privacy to their genetic information and the disclosure of that information to third parties who are at risk. Deftos in 1998 referred to the American Medical Association (AMA) permit to breach the confidence of the patients regarding his/her genetic information, when there is a need to protect the welfare of the relatives or the public interest. The American Society of Human Genetics (ASHG) advocate that genetic information relevant to health risk could be released by family doctor to other family members or close relatives to make them aware of a serious risk of harm and to take practical steps to minimise or remove that risk. In extreme case, physician may be privileged to violate a patient’s privacy if justified by the likely reduction of imminent risk of harm to an identifiable third party (Weiss, 1999). Though in less critical situation the information should be kept confidential. It appeared that there is a trend of support from medical and legal point of views to disclose genetic information to third parties whenever there is a likelihood of risk. Since there is no Federal law currently in place to prohibit release of genetic information, as such each state has it’s own legal procedure to deal with dispute of this nature. To clarify these, two examples will be explained :

In Olson v. Children’s Home Society of California (1988), the appellate court found no duty to disclose a genetic condition to relatives. The case involved a woman who had agreed to have her infant son adopted. Thirteen years later, she married, gave birth to another child who later died of a genetic disease. When she contacted the adoption agency to inquire about the health of the son she had put up for adoption, she was informed that the child was still alive, but also had a genetic condition. She and her husband sued the agency for wrongful death of their son, intentional infliction of emotional distress, and fraud, claiming that the agency had a duty to warn them that her child had a genetic disease. The trial court dismissed the complaint and the appellate court affirmed, holding that there was no special relationship between her and the agency that created a duty to notify her of the risk of having another child.

Another example, In Schroeder V. Perkel and venin (1981), a New Jersey couple who had two children born with Cystic Fibrosis sued the paediatrician who had treated older children and negligently failed to diagnose the condition in sufficient time to prevent the second pregnancy or to abort it. The New Jersey Supreme Court held that the physicians had a duty to the child as well as an independent duty to the parents to disclose that the child suffered from cystic fibrosis. Failure to diagnose the disease and advise the parents was a breach of the physician’s duty to the parents. Each physician could be held liable for the medical costs of a second child born with cystic fibrosis. The physician’s defence was that they owed no duty to the parents because the parents were not their patients. The court decided the case on foreseeability ground, holding that “The foressability of injury to members of a family other than one immediately injured by wrongdoing of another must be viewed in light of the legal relatioships among family members. A family is woven of the fibres of life;

Although individually spun, create a web of interconnected legal interest…. A physician duty thus may be extended beyond the interest of a patient to members of the immediate family of the patient who may be adversely affected by a breach of that duty  (Weiss, 1999).

6.2.2. Employment :

Many people are concerned about potential genetic discrimination by their employers. In 1995 poll of general public revealed that 85% indicated that genetic information should not be disclosed to employers and insurers (Miller, 1998). The same finding was found in 1988 National Centre for Genome Resources (NCGR) survey. Where 1000 American adults were asked about genetic information, and the survey found that the majority (85%) believed that employers should not have access to a patient’s genetic information. 63% indicated they “probably” or “definitely” would not undergo genetic testing if they knew that insurers or employers could discover the results information (Jefford and Daschle, 2001). Georgetown University survey also showed the same trend.

Federal Laws in America such as “The American with disabilities Act” and the “Rehabilitation Act” provide some protections against genetic discrimination in the workplace. The Society for Human Resource Management (SHRM) issued a policy document in November 2000, that stated, “The SHRM would oppose employment policies that permit employment decisions to be made based on an individual’s genetic information” (Jefford and Daschle, 2001).

Currently there are 24 states in America have enacted laws regarding genetic discrimination and employment. These laws stated that, no employers may required genetic testing or may use the results of genetic testing or genetic information to discriminate in employment.

In March 1995, the US Equal Employment Opportunity Commission (EEOC) released official guidance on the definition of the term “disability”. The EEOC’s guidance clarifies that protection under the American with disabilities Act (ADA) extends to individuals who are discriminated against in employment decisions solely on the basis of genetic information about an individual. For example, an employer who makes an adverse employment decision on the basis of an individual’s genetic predisposition to disease, whether because of concerns about insurance cost, productivity or attendance, is in violation of the ADA because that employer is regarding the individual as disabled. Issuance of the EEOC’s guidance is precedent setting; it is the first broad federal protection against the unfair use of genetic information (Hudson et al., 1995).

On other hand employers may have their own interests in knowing the risks caused by certain genetic diseases of their employees, in particular when the safety of other employees or the general public is at risk. As an example, if a person applied for a position that affects the public safety such as train driver, physician or airline pilot, the employer may ask for genetic screening of Alzheimer’s disease. The gene that cause this disease may be present but not expressed yet (in genetic term) which means “silent”, or it’s effect may not become manifested until late in life, which at the time of application may not pose any risk to the public safety. In this situation, the person may be denied employment far a head of posing any risk and this is may be justifiable, in removing possible future risk to the public!  In other example, if a person applies for a clerical job in a Bank and the employer ask for his genetic profile. The Genetic screening reveals that this person is predispose to diabetes in his fifties. Does the employer have the right to deny him the job, and opt to offer the job to a healthy applicant? In this case genetic discrimination considered being unfair. Society then will be faced with the conflict between an individual’s right to privacy in his or her genetic information and the employer’s interest in knowing about its worker’s health problems (Orentlicher, 1990).

In 1996, 35% of the Fortune 500 companies acknowledged using personnel health information in employment decision. In the same year another study conducted by a team of medical researchers documented more than 200 cases of individuals with a genetic predisposition who were asymptomatic reporting a number of discriminatory actions by insurance companies and employers (Weiss, 1999). 

A report by the British government’s Human Genetics Advisory Commission (HGAC) says that employers should be allowed to genetically test employees under certain conditions. The HGAC argues that employers should not use genetic test simply to exclude employees who may become ill in the future. In order to uphold their right not to know their genes, individuals should not be required to take genetic tests, except in what the report calls “exceptional circumstances” for example for susceptibility to conditions that might put the employees or others at risk in the workplace. In jobs where issues of public safety arise, the employer should be able to refuse to employ someone who refuses to take a genetic test. The other circumstances in which employers should offer genetic test is when a test can detect sensitivity to specific features of the working environment that do not normally present any hazard to other workers. In these circumstances, say the report, genetic testing would protect workers. The HGAC said its aim was to provide appropriate protection for the public in a manner least burdensome to employers. A recent analysis of employment genetic screening in the Journal of Occupational and Environmental Medicine found that in some circumstances it would be a cost effective way of reducing workplace induced health problems (GenEthics, 30/31 2000). The HGAC also conducted a survey of genetic testing and found that only employer currently using genetic testing is the Ministry of Defence, which screens pilots to see if they are carriers of the gene for sickle cell disease. It is though that carriers, who have single copy of the sickle cell gene, and are normally healthy, may be at risk of oxygen deprivation. The report admits that the evidence for this is uncertain. Because carriers of the sickle cell gene are mainly black, the practice of excluding them sparked a major controversy in the USA in the 1970s. The trade Union congress said the MoD (Ministry of Defence) policy was discriminatory. A spokesperson for the Campaign against Human Genetic Engineering (CAHGE) describes the HGAC’s report as an open invitation for employers to discriminate (GenEthics, 30/31 2000).

6.2.3. Insurance Companies :

Confidentiality is difficult to maintain in health insurance, because of the financial incentives involved. The knowledge of genetic information and possible predisposition to certain debilitating diseases will stigmatise the affected person and his family and may led to his/her lost of jobs and possible denial of insurance cover (Andrew and Jaeger, 1991).

Currently there are no federal laws in place in America to prohibit genetic discrimination in health insurance. Only 16 states have enacted laws to prohibit insurance companies from using genetic information to deny coverage or raise health insurance rates. Similar legislation is pending in other states (Rothstein, 1999). The Health Insurance Probability and Accountability Act of 1996 in America guarantee that insurers will cover all employees regardless of pre-existing conditions, health status or genetic background. This does not, however, prevent insurers from charging higher premiums to groups that include individuals with genetic illness.

Insurance companies on the other hand do argue that genetic information, as any other predictive medical condition should be used in deciding insurance cover. They also justified their act by claiming that not considering genetic information would be irrational, because it led to unfairly high cost premiums for those who lack the genetic diseases. The insurance companies case is not justifiable compared to recent trends to protect against in health insurance coverage and employment. Genetic discrimination play crucial part in hindering medical research by preventing scientists from studying families in order to understand gene mutations. People may be reluctant to volunteer for those studies, fearing that the result can be used against them (Weiss, 1999). This fear is more justifiable, if we consider that action of denying people employment or insurance cover may be based on data, which are inconclusive and indicate a predisposition or increased risk that may never materialise. Other additional factors, such as stress, diet, and environment contribute to the final outcome.

6.3. Reproductive Implications :

The implications of Human Genome Project on reproduction arise from the highly probable alliance of Medically Assisted Reproduction (MAR) with Diagnostic Genetics (DG). This alliance was referred to nicely by new term used by (Sliver, 1997) as Reprogenetics. This term comes from the merging of remarkable scientific and technological advances in two fields- Reproductive Biology and Genetics. This new field will turn science fiction into reality from cloning to embryo selection to genetic engineering and beyond (Sliver, 1997). It also raises serious ethical and legal questions (Ahmed, 1998) and (Serour, 2001).

Currently the medically assisted reproduction aims to help infertile couples through different techniques to have children.

6.3.1. Reproductive Technology :

Reproductive Technology expands widely after the birth of the first test-tube baby in July 25 1978 in Britain. Louise Brown, the name of the extraordinary baby that was conceived outside her mother’s womb and since then the name IVF (In vitro fertilisation) and the dawn of new age of reproduction started.

Currently there are several approaches available in IVF clinics across the world that help infertile parents to have a baby and more importantly a healthy one. The desire to have children is an instinctive behaviour beneficial to reproduction as explained by Silver. This desire is such a powerful instinctive force that many people who experience it have had a hard time explaining where it come from.

There are many diverse factors that contribute to infertility of both women and men. The natural process of conception takes place when enough healthy sperms make its way to fallopian tubes and fertilise the egg. The fertilised egg move into the uterus where implantation takes place. The fertilised egg will then grow into a foetus. Any faults in any of these steps will result in inability to conceive.

There are many factors that contribute to male infertility, among them :

* Sperm count less than required

* Sperm mobility is slow

* The tubes (vas deference) through which the sperm swim from the testes to the penis may be blocked

* Hormonal imbalance which affect the ability to produce the optimum quality and quantity of sperms

* The immune system may produce antibodies that attack the sperms

* Undescended testicles

* Chronic condition such as depression and asthma

Whereas female infertility may arise from the following factors :

* Hormonal imbalance affect the ovulation

* Damage or block of fallopian tubes

* Tumours and fibroids can cause cervical problems and poor mucus production

* The immune system may produce antibodies that kill the sperm of the partner or the fertilised egg

* Irregular period

* Uterus rejection of the growing foetus

Most of the previously mentioned infertility problems are currently treated in different ways through the following approaches :

* Infertility medication

* Reproductive surgery

* Reproductive technologies

I will focus on Reproductive Technologies for its relevance to this book.

Currently there are many reproductive technologies available to assist infertile couple to have babies, among these technologies which are expanding yearly are :

6.3.1.1.  Artificial Insemination (AI) :

This technique involves taking a sample of sperms from infertile male with slow sperm motility. The sperms are cleaned in special way and then injected into female uterus with the hope to fertilise the ovum.

6.3.1.2. In Vitro Fertilisation (IVF) :

This technique refers to fertilisation of an egg by a sperm outside the womb in a laboratory in culture dish. The fertilised egg or zygote then transferred into the uterus after few days. Currently there are more than 500 IVF clinics across the world, in United States alone more than 300 clinics and the number increase yearly.

6.3.1.3. Gamete Intra Fallopian Transfer (GIFT) :

This technique involves combination of an egg with sperms and then places them directly into the fallopian tube where conception will occur naturally.

6.3.1.4. Zygote Intra Fallopian Transfer (ZIFT) :

This procedure ensures that fertilisation takes place first in the laboratory and within 24 hours, the zygote is transferred to the fallopian tube by laproscopy. ZIFT has an advantage over GIFT approach in particular if the infertility problem is with male rather than female.

6.3.1.5. Intravaginal Culture (IVC) :

This technique takes the advantage of the body’s own environment, where the sperm and egg mixture are placed in a culture medium inside a sterile hermetically sealed container carried inside the vagina.  After 1-2 days the fertilised egg transferred into the uterus.

6.3.1.6. Ultra Sound GIFT :

The purpose of this technique is to avoid surgery involved in GIFT. The entire procedure from egg retrieval to tubule transfer of the egg and sperm are performed by ultrasound guidance.

6.3.1.7. Intra Cytoplasmic Sperm Injection (ICSI) :

This technique revolutionises the infertility treatment utilising micromanipulation technology that specifically targets male factor infertility issues. It involves the injection of a single sperm directly into the egg avoiding the infertility problem of poor sperm motility and low count. Current fertilisation rate of ICSI is 65%, which is much higher than any procedure so far.

6.3.1.8. Round Spermatid Nucleous Injection (ROSNI) :

This technique is an exciting breakthrough in treatment of the infertile man who has zero sperm count. In this technique, immature cells (round spermtids) are removed from the testis before the final stage of spermatogensis and the formation of sperms. The nucleus of these cells is taken which contain half the number of the chromosomes and injected directly into the female egg, which is removed during IVF.

This technique which still needs to be perfected will provide a hope for hopeless couple to father a biological child. 

Most of the above-mentioned techniques are currently used across the world to treat infertility, and the IVF services continue to expand at a comparable rate. By 1994, more than 38 countries had established IVF programms. It is estimated that by the year 2005 more than 500.000 IVF babies will born annually in US alone, and millions more in other countries (Sliver, 1997). The annual test tube babies count in France is 150.000 (Testart, 1995). Though the cost for this sort of treatment is very expensive and the parents can expect to pay about $25.000 for one child conceived in this way, nevertheless the strong desire for having a child will push the number of IVF clinics to increase dramatically in the future. In a move recalling Aldous Huxley’s (1960)  famous production lines for making babies in Brave New world, researchers in the US are building a “chip” that can automatically carry out all steps involved in IVF, from fertilised egg to preparing embryos for implantation. Ultimately, such devices –which amount to artificial reproductive tracts-may even be able to sort and test embryos for genetic flaws (Ananthaswamy, 2001). This work could be the first step towards a future in which IVF becomes the norm, says Geroge Seidel, a reproductive physiologist at Colorado State University in Fort Collins. “Fifty or 100 years from now, our in vitro procedures for parts or even all pregnancy may end up being safer than dealing with the various things that occur in the body- in terms of viruses that the mother come across, toxins and so on” (Ananthaswamy, 2001).

6.3.2. Screening in early pregnancy :

Currently there are two approaches to deal with genetic diseases in early pregnancy. One is called prenatal (antenatal) genetic testing which is less controversial and currently performed on a limited scale. The second is called Preimplantation genetic testing which is more controversial and open the door wide for future baby designers with the help of huge information provided by Human Genome Project.

6.3.2.1. Prenatal Testing :

This test is offered where there is a family history of having a genetic disease caused by a single gene or inherited chromosomal abnormality. The tests provide results to the parents in order to make an informed decision whether to terminate the pregnancy or not. There are different techniques to perform the prenatal genetic test :

* Amniocentesis :

In this technique a needle inserted through amniotic cavity, which contains cells of the foetus, samples a small quantity of amniotic fluid. It is usually carried out during the 16th through the 20th weeks of gestation. The cells are cultured and subject to examination (eg. Chromosome number is examined to confirm the right number or otherwise Down’s syndrome!)

* Chorionic Villus Sampling (CVS) :

Samples are taken from the developing placenta at 9-12 weeks of gestation. The cells are subject to test as in amniocentesis, though both procedures increase the rate of miscarriage slightly.

* Coelocentesis :

This technique promise to perform test before 10 weeks and samples are taken from coelomic cavity, which surrounds the amniotic sac. This technique is less risky to the safety of the foetus compared to previous techniques.

All the previous techniques can be used to determine the sex of the foetus, which provide very useful information to avoid sex-linked diseases. Though the parents could exploit the results to choose the sex of the child for non-medical reasons. It also helps the parents to check for debilitating diseases which might be shown up in early childhood, such as Down’s syndrome, Spina bifida, Cystic fibrosis, Tay-Sachs, Huntingdon’s disease and many others and take the responsible informed decision. The test can also provide biochemical abnormalities at the genetic level, detecting up to 180 genetic diseases (Kevles and Hood, 2000). Sir Robert Winston from Hammersmith Hospital in London was able to take single cell from very early embryo (6-10 cell) and then to sex them by examining specific DNA markers on the Y chromosome. Their aim was to help couple with a history of x-linked conditions. Removal of the individual cell did not damage the rest of the embryo. Although this technique could not guarantee the birth of a healthy boy, it could ensure, though that the mother receive a female embryo (Garvin, et al, 1995). It could also prevent unnecessary abortion for certain x-linked conditions, all male pregnancies would be terminated after sex determination by aminocentesis or CVS sampling, although half of these would be unaffected. Same approach was adopted for screening for Cystic fibrosis, Duchenne muscular dystrophy and others.

6.3.2.2. Preimplantation Genetic Diagnosis (PGD) :

This technique involves a removal of a sample (biopsy) from an early IVF embryo at the stage of 8 cells. While the sampled cell is tested, the remainder of the embryo is stored to be implanted should the tests show that it is free of serious genetic disease. Since the cells of the early embryo are undifferentiated, the removal of one cell does not harm and subsequent development proceeds as normal. 

This is the most controversial area where the test could be misused and instead of being used for medical purposes to help infertile parents to have healthy children, PGD could be used in a way that implies acceptance of an open-ended eugenics.

To discuss the implications of PGD we need to distinguish between two approaches :

* Embryo Selection : In IVF clinics, the high risk parents of some genetic diseases such as Huntington’s disease, Tay Sachs and Cystic fibrosis, are offered an option to ensure that they will not pass on the defective genes to their children. They were also offered to be ignorant if they wish to, which many parents do. Embryo selection provides an effective and safe way of preventing the appearance of these devastating genetic diseases in growing children. The idea behind this technique is, as long as parents are capable of producing non defected genotype in their offspring according to Mendelian ratio, there is always a possibility to select an embryo with a healthy genotype. This possibility is available as long as there is one parent who is disease free or both parents who are carrier of recessive genotypes. The technique involves the test of growing embryos resulting from IVF. The test looks for gene mutations associated with certain genetic diseases among the embryos, and those free from such mutations are selected and transferred into the uterus for implantation. Over 100 normal babies’ worldwide have been born following PGD for sex or for a specific disease (Mange and mange 1999). The genetic diseases that have been diagnosed in this way are listed in table (3)

* Preimplantation genetic manipulation : This is the most critical and debatable area in reproductive technology and could be open widely to misuse. But also we need to make two distinctions: genetic manipulation to treat rare genetic diseases or to enhance or nullify other social attributes and ultimately to change the Human nature. In very rare case, if two cystic fibrosis couple or sickle cell anaemia couples decided to marry and have children. All their children will have the same diseases present in their parents, in this case only genetic manipulation could help them to get healthy children through combination of IVF-PGD techniques.

The other application of genetic manipulation is the most frightening venture. Where to add a new gene in growing embryo which is not naturally present in his parents or delete one which is naturally present. In the first instance we refer to enhancement and in the later we refer to purification. Luckily both are not attempted yet in Human, but are routine procedure on mice and other animals. But Genetic manipulation will eventually be used by reprogeneticists as explained by (Sliver, 1997). “Genetic engineering will begin in away that is most ethically acceptable to the largest portion of society, with the treatment of only those childhood diseases-like sickle cell anaemia or cystic fibrosis-that have a sever impact on quality of life. The number of parents who will desire this service will be tiny, but their experience will help to ease society’s trepidation. As the fear begins to subside, reprogeneticists will expand their services to nullify mutations that have less sever impact on a child, or an impact delayed until adulthood. Predisposition to obesity, diabetes, heart diseases, asthma and various forms of cancer all fall into this category. And the technology spreads, its range will be extended to the addition of new genes that serve as genetic inoculations against various infectious agents, including the HIV virus. The same time, other genes will be added to improve various health characteristics and disease resistance in children who would not otherwise have been born with any particular problem. The final frontier will be the mind and the sense. Alcohol addiction will be eliminated, along with tendencies toward mental disease and antisocial behaviour like extreme aggression”.

There will be no limits to what can be achieved through genetic manipulation after we seize control over our Human Genome and subsequent availability of huge genetic information.

The position of various European religions with regards to Bioethical question regarding reproductive technologies are presented in Table (4)

6.4. Psychological Implications :

The genetic information will be accumulated as a result of Human Genome project and consequently result in expansion of genetic testing. The genetic testing will expand beyond single gene disorders, to testing for genes associated with common disorders, thus it is very crucial to take into consideration what impacts this will have on the psychology of the individuals, their families and the society as a whole. The psychological implications of genetic screening for genes associated with increased risk of certain diseases have been well studied and researched (Croyle, 1995). Currently most of the genetic screening is carried out in prenatal or preimplantation stage to ensure the safety of the future children, but predictive tests, which allow people to know their possible predisposition to certain diseases, are increasing frequently as genetic information accumulated. The following table (5) show some currently available DNA-Based gene tests :

The completion of Human Genome sequence will facilitate the identification of all the genes that contribute to diseases. The functional classification of disease gene and their products will reveal general principles of Human diseases. Sancheze and his team (2001) determined functional categories for nearly 1000 documented disease genes, and they found striking correlation between the function of the gene product and features of the disease, such as age of onset and mode of inheritance. Online resources documenting Human diseases and their associated genes are available on (WWW.ncbi.nlm.nih.gov).

Geneticists now can identify predisposition to a growing number of hereditary diseases. Test now exist for about thirty disorders, and as more genes and markers are identified, it is anticipated that test will be available to indicate predisposition not only for purely genetic diseases but also to very complex disorders suspected of having genetic components. These include mental illness, hyper activity, early-onset of Alzheimer’s, certain form of cancers and alcoholism and addiction. In other words, test will predict behaviour as well as diseases (Kevles and Hood, 2000).

Over 4 million genetic tests are now conducted every year in US alone.

The factors that influence the decision to take genetic tests are:

* Availability of effective cure for treatment or assured preventative measure. Studies showed that 10% of people take predictive genetic test for Huntington’s disease for which there is no current treatment compared with 50% taking predictive genetic test for breast cancer disease for which there is some possibility of prevention and treatment (Marteau and Croyle, 1998).

* Culture and Societal factors

* How the test is offered

* Reducing uncertainties regarding future risk

* Gender factor, women are more likely than men to undergo carrier tests (Evans, et al. 1997).

* Religious aspect

The ultimate value of genetic screening must be assessed in social and psychological terms. Elizabeth Anionwu, a senior genetics counsellor at the institute of Child Health in London argue, through a list of questions to the benefit of genetic screening; Do the people being tested feel that genetic screening improves their lives, or does it, on the whole, make things worse ? What do those on the receiving end of a “genetic service” actually experience ? And on what information do people base their decisions when given the option of having a genetic test, or a termination, and what knowledge do they take away with them after counselling sessions ? Answering such questions is the goal of a new academic discipline known as “psychosocial genetics”, which is fast attracting the interest of Britain’s major grant-giving bodies such as the Medical Research Council and the Wellcome Trust (Vines, 1994).

To assess the psychological impact on personnel level, a study carried by Marteau, head of the wellcome-funded psychology and genetics research group at Guy’s Hospital in London and her colleagues would help to throw some light. In two studies, one on the impact of screening programme for Tay-Sachs disease, a neurological disorder that leads to the early death of babies born with two copies of the faulty gene (mostly common in Jewish community). The second study was on screening for Cystic fibrosis disease. In both studies the authors revealed that, hearing a piece of bad news- learning that you are a carrier for the genetic risk reduces a person’s tendency to be optimistic about the future, with heightened anxiety and with the possibly harmful consequences in the long run  (Marteau and Bekker, 1994). Informing a woman that she carries an allele at BRCA1 that is associated with a high risk of developing breast cancer is a serious issue, particularly if treatment options are difficult, painful, debilitating, or oftentimes less than successful. In a study conducted by (Leman, 1996) on families with Hereditary Breast-Ovarian cancer indicated that many women from high-risk families simply prefer not to know to avoid the trauma associated with knowing.

On society level, Genetic screening also has huge impacts. The screening of black Americans during 1970’s for sickle-cell anaemia resulted in wide spread discrimination against people who are carriers. They were discriminated against in arm forces and by employers. The same situation happened in Greece, when screening started for thalassaemia, a blood disorder equivalent to sickle cell anaemia among Mediterranean inhabitants. Healthy carriers were stigmatised by the community and devalued as marriage partners (Vines, 1994).  In another study a group of Dutch doctors have found “unexpected long term emotional numbing” and “survivor guilt” among people who thought they were at risk of Huntington’s disease but were then found not to have inherited the gene. In some cases their relatives reacted to their privileged position by banning them from the family because the HD tie had been severed, the Dutch researchers report. Others couldn’t relax and enjoy feelings of relief because they felt obliged to be continuously available to support affected or at risk relatives (Vines, 1994). Women taking the gene test run the unusual psychological and social risks and these risks will very likely reach their daughter as well (Casey, 1997).

Many in the medical establishment believe that uncertainties surrounding test interpretation, the current lack of available medical options for these diseases, the tests’ potential for provoking anxiety and the risks for discrimination and social stigmatisation could outweigh the benefit of testing.

6.5. Philosophical and Conceptual Implications :

Since the dawn of history, the argument of Human responsibility, free will Vs genetic determinism has been an important part of Human thinking. If the theologians and philosophers discuss this issue logically, the Geneticists and in particular behaviour geneticists are tackling this vital issue experimentally. They are trying to prove whether people’s genes make them behave in a particular way ? Or can people always control their behaviour ? And what is considered acceptable diversity ? In answering these questions the scientist do differ, some proof it this way and others believe it the other way. Some believe that the gene makes us Human and the notion of “genes are us” provides a sensational media items these days. We heard on a daily basis that they found a gene for aggressiveness, homosexuality, alcoholism and even promiscuity (Ahmed, 1995 a)! We heard that the genes make some musicians, Olympic athletes, or genius and make others schizophrenics, manic-depressives, even drug addicts. Moving in this slippery road will inevitably lead us to the memory of Eugenic movements in first half of 20th century as I discussed earlier in section 6.1.1. Where the reliance on a distorted scientific data and then promoted these results as an ideology caused tremendous misery among wide spectrum of people across the civilised world!. Single genes do not determine most Human behaviour. Only certain rare disorders such as Huntington’s disease have a simple mode of transmission in which a specific mutation confers the certainty of developing the disorder. Most behavioural traits have a more complex aetiology, known as complex traits. Such traits have no such clear-cut inheritance and most likely result from the interaction of multiple genes with various environmental factors, and possibly many genes interacting with one another as well as environmental factors. With the recent completion of the of the Human Genome sequencing project and with the aid of a greatly improved map based on hundreds of thousands of single-nucleotide polymorphism (SNPs), association studies should be able to identify genes involved in complex traits. In addition, computers are increasingly becoming more efficient at doing much of the hard work of positional cloning. Thus, gene sequence and even polymorphism can be identified by searching appropriate computer database (McGuffin, et al., 2001). A number of genes have been implicated in playing a large part in the susceptibility of certain behaviours. as shown in table (6). However, many of these studies have not been successfully replicated mainly due to the enormous underlying complexity of such traits and the inefficiency of experimental designs.

Some of the recent researchers who advocate the biological basis for certain behaviours rely on certain studies on mice and rats (recent research on enhancement of memory by American scientists, GenEthics, 30/31 2000). In other instance, studies on the worm C.elegans in three specific area of research: Genetic basis of Chemoreception, which is analogues to taste and smell in Human, Social feeding and classical conditioning and associated learning. All these studies show genes in the worm C.elegans control these behaviours. It is worth mentioning one example relating to social feeding in C. elegans. A recently described gene controls an interesting aspect of social behaviour in C. elegans. When various strains of the worm kept in laboratories around the world are examined for feeding behaviour, two phenotypes are observed. Some worms when plated onto a petri dish containing bacteria, spread out evenly across the plate, and feed essentially as loners. They tend to move a way from one another if they collide. In other strains, the worms always group together in visible clumps, where they feed as “socializer”. They actively brush up against one another, squirming and winding around one another as they feed. This behaviour is induced by the presence of food; when food is absent, the socializers also spread more or less evenly across the plate (Clark and Grunstein, 2000). It turns out that this difference in feeding behaviour is determined by which of the two alleles of a single gene is present in a given strain. The npr-1 allele is found in social strain whereas npr-1.215 allele defines loner strain. When the npr-1.215 gene of the loner strain was used to replace the npr-1 gene in social feeders, they became solitary feeders. This clearly demonstrates the genetic basis for feeding behaviour. The other experiments with chemoreception and classical conditioning and associated learning revealed the same results whereby the genetic basis is clearly responsible for certain behaviour in the worm C. elegans.

A fairly complete “library” of genes expressed in the Human brain has already been established, but the function of very few of them is actually known. The C. elegans genes can be used to screen this library for their Human homologs, and the function for these genes we find in C. elegans will likely be the function they serve in the Human nervous system as well, for more detail, refer to section 2.3.2 functional genomic. We can then ask whether variants of these genes among Human correlate with variations we see in a range of Human behaviours, particularly learning and memory. Thus, research on a lowly roundworm has the potential for providing important insights into Human behaviour, and the functioning of the Human brain (Clark and Grunstein, 2000).

However, there is strong evidence to suggest there is a greater level of complexity in the role that genes play in Human when compared to organisms with a lower level of molecular complexity (Ewing and Green, 2000).

Behaviour is a sophisticated aspect of Human attributes because it is the product of the most complicated organ in the Human body, the brain. The genetic basis of many aspects of Human behaviour is very difficult to assess due to the fact that a human’s behaviour is not a constant physical entity, but rather extremely dynamic and continually changing all the time. This changing potential gives the Human being an immense capability to adapt to divers environment and increased his survival opportunities. Thus, no wonder the genetic basis of Human behaviour is still poorly understood. But, for the plan fact is that, if our mind and rational thinking and conduct are connected to our brains, then the characteristics of our brains like any other organs of our body will be influenced by our genes. That dose not necessary means that there are genes for IQ or Schizophrenia, but there are bound to be genes that influence IQ and Schizophrenia. Though Schizophrenia is a fuzzy and socially constructed disease, there is now clear evidence of the role of genes in provoking this condition (Baron, 2001).

The role of genes in Human behaviour has been largely established from family studies and in particular from the quantitative genetic research on twins and adopted people. The findings show a significant correlation between the genetic components and certain behavioural traits, such as, psychopathology, personality, and cognitive abilities and disabilities. These studies compare certain behavioural traits between two kind of Human twins, monozygotic (one egg fertilised by a single sperm), which split into two at a very early stage of development resulting into two individuals who are genetically identical. The second is dizygotic twin which result from two eggs being fertilised by two different sperms, thus the resulting twins is the same as brothers and sisters in term of genetic make up. One of the best studies on Human behaviour that rely on the interaction of many genes and a multitude of environmental factors is Schizophrenia. Large number of Geneticists believe that genetic contribute largely to certain types of this disorder and they derived their conclusion from studies on twins as shown in table (7) :

These studies clearly show that genes play an important role in the susceptibility to schizophrenia. Some researchers believe that such studies are not conclusive. Their criticisms arise from the fact that these studies are done on twins who are raised in the same household by the same parents and almost share the same environmental factors which are known to be the main factor in the development of some kinds of schizophrenia (Singer, 1985).

Though some studies of the physical and behavioural characteristics of identical twins raised apart revealed very interesting similarities. Studies carried at University of Minnesota on 39-year old female twins who were separated shortly after birth. Each arrived at the study centre wearing seven rings on the same finger; each also wore two bracelets on one wrist, and a watch and a bracelet on the other. One twin had a son named Richard Andrew; the other had a son named Andrew Richard. Other similar finding were reported (Singer, 1985). Each pair of twins in the study was subjected to six days of physical and psychological testing. Of all of the tests administered to the twins, the highest concordance was in their scores on IQ tests.

Although these research showed how certain behaviour are influenced to large extent by the genetic make up of an individual, but still suffer serious criticism. The most sound criticism is the very small number of cases studied where identical twins raised apart are very rare. Other criticisms that the environment in which separated twins grow up are not very different (Singer, 1985).

It is a concern that the importance of environmental influence will be lost in the fanfare about genetics, says Professor Robert Plomin at the institute of Psychiatry in London. The first message from genetic researches is that genes play a surprisingly important role for almost all complex traits, whether behavioural or medical. But the second message is just as important: individual differences in complex traits are due at least as much to environmental influences as they are to genetic influences (Carringto, 2000).

In the same way professor Peter little, of Imperial College, London says : “By understanding genetic changes, we can then go on to identify the environmental changes that contribute“. If we can identify the nature, which we will do to a very significant extent, we can use this to identify the nurture. This is the second goal of the Human Genome Project.

Small numbers of diseases are caused by genetic defect alone, but the majority has both a genetic and environmental component. Why is concordance for complex disease in identical twins often only in the 40%-70% range, even though such twins share all of their genes and usually have the same intrauterine and postnatal environment. Thus suggesting stochastic or random factors may play a role. And environmental influence may be at least as important as genetic factors in determining intelligence and other aspects of personality.

6.6. Bioethical Implications and Islamic view :

The speed of innovation in biology and in particular genetic engineering research is so fast that it will outrun peoples’ ability to grasp, adapt and adjust to it in a sensible and rational way. The world lacks the mechanisms to come to term with these sophisticated discoveries. This explains the setting of a wide spectrum of committees, authorities and institutions to deal with different bioethical questions that resulted from the development in this research.

Ethics is the way to deal with extremely difficult questions of right and wrong. It is the study of moral value of Human conduct and of the rules and principles that govern that conduct. It is often referred to as “moral Philosophy”.

Basic categories of ethical concern fall into two classes :

1- Intrinsic Concern that deals with things that is thought to be wrong in themselves such as nuclear weapon or Human cloning.

2- Extrinsic Concern which involve the application of the technologies. They are neutral in themselves, but open to misuse or cause harm to others, such as genetic engineering that can be used to treat disease or it could be “misused to create biological weapon”. Though other scientists believe that genetic engineering is also intrinsically wrong (Wan Ho, 1998).

The categories of ethical concerns of genetics manipulation are explained in details by Bruce, (1998) and Reiss and Straughan, (1996). There is a striking analogy between these two categories and what we have in Islamic Jurisprudence.

So where does Islam stand ?

I will discuss briefly, first Islamic position on recent general genetic development and secondly concentrate on Human Genome :

6.6.1. Islamic views on recent genetic researches :

Islam, along with other major religions have been, faced with these difficult bioethical questions and has to formulate a view derived from its main sources. Some of these views have been mentioned in table 4. Nasim (2002) summarised the Islamic view on some of the questions that are currently being debated, table (8). He also referred to recent COMSTECH initiative to establish an international committee on bioethics to address these complex ethical issues from an Islamic perspective.

Though with regards to Gender selection, Muslim scholars do differ in their views, whether the selection based on medical purposes or even social purposes (Serour, 2001).

Since the cloning of the sheep, Dolly, in February 1997 a large number of Conferences and meetings were held across the Muslim world to discuss these developments.

Islamic Jurists vary in their verdict towards recent development in genetic engineering and in particular cloning, ranging from total rejection to giving cautious and conditioned acceptance (Ahmed, 2000) and (Baheralum, 1997). The position of those who reject the technology varies as reflected in the following fatwa (Islamic ruling) :

1- The verdict of Dr. Nasser Fared Wasal the Mufti of Egypt who said, “we forbid these techniques” and he refers in this instance to cloning even in the treatment of an infertile couple and he stated that we should accept the divine will of Allah (SWT).

2- Verdict of Sheikh Tantawi the Grand Mufti of Al Azhur Mosque : he forbids this technology based on one verse in Qura’n in Ch. 2 where Satan argues with God in Verse 119. “Verily, I will mislead them, and surely, I will arouse in them false desires; and certainly, I will order them to slit the ears of cattle, and indeed I will order them to change the nature created by Allah”. And whoever takes Shitan “Satan” as a wali (protector or helper) instead of Allah, has surely suffered a manifest loss.

3- Ibn aithemein of Saudi Arabia condemns cloning in a very extreme way.

4- Some scholars of Al Azhur even forbid Genetic Engineering applications as a tool whereby could be used to alter Allah’s creations. They rely on the same verse mentioned earlier in Tantawi’s verdict.

5- Dr abdul Muti Biaomi of Syria forbids genetic engineering applications and he relies on the delicate equilibrium of the ecosystem. He refers to many verses in the Qura’n which indicate that any interference that spoils the delicate balance in nature is not allowed in Islam.

There are also scholars who reject the technology on extrinisic grounds.

Fazlullah in Lebanon, Saeed Alhakeem in Iraq, and Almelani in London have no objection to the technology as such, but worry about its applications. They consider that this science reveals the delicate and sophisticated laws of God’s creation and the norm of life, which should strengthen the faith in this divine power.

There are those who have no objection to these technologies. They rely on one ‘jurisprudence’ rule which states that, everything is allowable in Islam unless there is a clear evidence in the Qura’n or Sunnah forbidding it. Since there is no clear evidence, according to their judgement, that forbids these technologies, they have no reason to believe it is forbidden.

Scholars from “Islamic Jurisprudence Council”, an affiliate of the Muslim World League, a Saudi based organisation, has ruled that Muslims can benefit from genetic engineering to prevent or cure diseases. They urged for steps to ensure the process did not become dangerous or violate Islamic law. The scholars also acknowledge genetic testing as an accurate means of identification and great help to forensic medicine. The council is an organisation which aims to advance Islamic unity and solidarity while promoting peace and Human rights.

The Islamic Educational, Scientific and Cultural Organisation (ISESCO) is the cultural arm of the Organization of the Islamic Conference (OIC). ISESCO sponsored a four-day forum for delegates from 12 countries to discuss the Islamic view on modern medical issues including Human cloning and genetic engineering. This symposium was held in Casablanca, Morocco, June 97.

The delegates agreed in principles on cloning techniques and genetic engineering in animals and plants. ISESCO Director General Dr. Abdulaziz Othman Altwaijri of Saudi Arabia called on delegates to find a religious and science based Islamic perception to give guidance on the issue of Human cloning. The Casablanca meeting urged Islamic governments to draw up the necessary legislation to close doors directly and indirectly in the face of foreign research institutions and experts to stop them using Islamic countries as a field for Human cloning experiments.

The Casablanca recommendations are not considered a final fatwa (religious ruling) or a final scientific opinion. ISESCO is joining the world community in moving towards setting up rules for scientific research in the field of genetic engineering including Human cloning. ISESCO also co-sponsor and organised a seminar before that in Qatar with World Islamic Call Society on ethical implications of modern researches in Genetics (1993).   

There are different and somewhat conflicting views regarding genetic engineering applications within the Muslim world. But while there are those who will embrace the technology, and there are those who reject it immediately, there is a strong central position held by those who require more knowledge before a final decision can be taken.

6.6.2. Gene Therapy :

Muslims and scholars and large number of scientists encourage gene therapy to treat genetic diseases such as, Cystic Fibrosis, ADA deficiency, Fanconi’s anaemia and others. This manipulation currently performed on somatic cells. However, non-therapeutic manipulations are controversial and majority of scholars are cautious regarding its implications on the society level and Universe as whole (table 8). Recently Bayoumi and Ali (2001), list a number of recommendations to deal with this critical issues to raise awareness among Muslim Scholars :

1- Somatic cell gene therapy is permissible, regulated as an experimental therapy.

2- Its use for enhancement purposes should be prohibited till we prove the safety of all somatic cell gene therapy.

3- Germ line interventions are indefensible and should be categorically prohibited in both therapy and enhancement.

4- Islamic world should work parallaly with the international committees in establishing the guidelines for gene therapy in accordance of the Islamic Shariah.

5- The Islamic community should formulate an organisation for bioethics, to discuss all the new developed technologies.

6- Initiations of local, regional, ethical committees to follow up the recent developments and formulate recommendations.

6.6.3. Stem- Cell Research :

This field is still in its infancy stage and require further debate and deliberation among the entire world in general and the Muslim world in particular. However, it is worth mentioning the following recent recommendations proposed by (Nasim, 2002) :

1- It is claimed by the experts in the field that the research on stem cells has great potential to relieve human disease and suffering. If this is the case then it is not only allowed but it is obligatory ( fard kifayah) to pursue this research.

2- The use of embryonic stem cells should be very heavily limited. Only allow isolation of stem cells from frozen embryos that were created for the purpose of in vitro fertilisation and would otherwise have been destroyed. Obtain full consent from the donors. Provide safeguards monetary compensation to embryo donors and against the creation of embryos in excess of what is required for in vitro fertilisation.

Perhaps research using stem cells derived from adults will eventually prove to be most promising. We should encourage further research on the use of adult stem cells, to the point where it will be unnecessary to use embryos for this purpose. Specifically, we should find better ways to isolate existing stem cells in the human body.

6.6.4. Preimplantation Genetic Diagnosis :

As I have explained in section 6.3.2.2, the scientists differentiate between PGD for medical purposes which is currently a routine practice offered to high-risk parent, to help them having healthy children, and the controversial preimplantation genetic manipulation which is aiming to enhancement or purification. As a result of PGD, gender selection whether for medical or social purposes is yet require further debate and discussion among Muslim Scholars (Serour, 2001). As far as PGD for sever genetic diseases and the possibility of preventing the implantation of defect embryo in the womb, it is allowed in the sharia (Serour and Omran 1992). Some scholars have accepted abortion in the early stage of pregnancy (during the 120 days, the period before instillment of the spirit), if the prenatal diagnosis revels a severe deformed or genetically defect embryo. This is on the assumption that life is not as yet evident in the embryo, which, in their view, is at that point only a fluid, a clot of blood or a mass of tissue (Al-Qardawi, 1993).

6.6.5. Some Muslim Scholars’ Views on Human Genome Implications :

I put forward a number of questions relating to the implications of Human Genome to a number of Muslim scholars in the Muslim world. I first explained to them a preliminary information as background to help them in formulating informed views. My questions were grouped under the following headings :

* Privacy of genetic materials

* Psychological implications

* Pre implantation genetic test

* Gene patenting

* Human will vs genetic determinism

I received quite a thoughtful response form some of the scholars (at the time of writing this manuscript) who are kind enough to spare some of their precious time to respond to my quires.

All the scholars who responded encourage the genetic research, which facilitate the diagnosis and the treatment of the diseases.

Fazlullah of Lebanon responded to the questions as follows :

(1) The genetic substance is a formative peculiarity for its bearer as part of his formation. As for the common knowledge of this substance, that person does not own it and, thus, there is no prohibition on the people knowing it. Unless it represents a personal defect, the knowledge of which by others leads to negative consequences in their respect for him or her losing some real opportunities in their life. In such case it is prohibited. As an Islamic ruling, talking about the defects or shortfalls of the person if they are part of the peculiarities, which he conceals from people, whether in his absence or presence, for it is forbidden to cause harm to the respected person or violate his immunity or backbiting him. However, this is permissible if there is an urgent interest for him in informing his relatives, friends or those taking care of his affairs, on the basis that their knowledge may rescue him from an illness by working towards curing him, or may prevent from future negative consequences. Particularly, if this substance leads to endangering his life, which makes the knowledge of which a chance to rescue him from it. Perhaps, the individuals involved should know about it so that they can be able to do what is needed for the rescue measures. There is no need for seeking the permission of the patient in these cases. The summary of the idea is that fundamentally the others should not be informed about this peculiarity if it represents a formative defect which its bearer does not want the others to know about, unless in cases of relieving harm from him or advising others. If it is not a defect (however), then there is no prohibition on talking about it without his permission. This view also shared by Al Harandi and Al Jawahri of Iran, in addition to Alsanad of Iraq.

Nasim (1995) referred to the “Gender discrimination” used by the employers to recruit individuals who show greater resistance and lack susceptibility to occupational hazards in the workplace and did question weather this will provide an excuse to the employers to become less vigilant and responsible in maintaining a cleaner and hazardous free environment.

(2) It is not obligatory to inform him about what the substance leads to of future psychological illness. In fact it (becomes) prohibited if this puts him in the negative psychological effects at the present (i.e. the negative frame of mind), as a result of the reaction to this knowledge with his self/personal feelings. (However), if informing him about these (consequences) conforms to the possibilities of carrying out a preventive measure, which will protect him from future harm, then there is no prohibition. Aljawahri has the same view. Social implications in choices for marriage partners, susceptibility to such diseases as cancer and cardiovascular problems. Individuals destined to live under this constant fear, the psychosocial implications of such information will also need to be critically examined (Nasim, 1995).

(3) It is prohibited to carry out abortion simply because it has become known that the foetus suffers from a dangerous illness, especially if after the soul has been infused into its body after the foetus attains 120 days. Abortion prohibited once this stage is attained, except in extreme condition when the life of a mother is at high risk. Before 120 days abortion may be tolerated -according to reasonable number of scholars- for a reason acceptable to the sharia, such as the case of untreatable sever congenital anomalies and only with the consent of parents. This is shared by many other scholars (Al-Qardawi, 1993) and (Al Muhammedi, 1993). Though Aljawahri and Alharandi believe that abortion is prohibited before and after 120 days, and only permitted if the mother life is at high risk. Serour (2001) mentioned detailed explanation in this regards.

(4) The mere knowledge of the company about the gene does not give it the patent so as to have this knowledge (as a knowledge) possession to the extent that the owner who himself owns the gene is prohibited from acting freely with. Al Harandi have the same view, whereas Alsanad believed that the company have the right to patent the genetic material provided it get a contractual agreement for that. Nasim (2002) indicated in table 8 that research of commercial nature id not allowed.

(5) Genetic peculiarities, exactly like all living elements within the body, can leave their negative or positive effects on man by preparing the psychological, mental and practical circumstances to move in their direction ? But they are not outside the preparation for that - this preparation which may clash with the Human will power, which may be affected by the peculiarities of the knowledge coming from outside or the objective circumstances which is surrounding the self - which may lead to some practical activities that may change some of these effects. At any rate, choice is not distant from personal effects within the Human formative peculiarities, but it has something else of the Human nature, in the depth of the instinct that Allah, the Most High, amassed in it. This means that whatever effect the genes have, they do not represent the causative inevitability in the consequences so as man loses choice. All the Scholars agree that genes have no overriding power over the Human will, and Allah the Most High is the Knowing.

I believe that the above-mentioned views still need to be debated and discussed further across the Islamic scholars and scientists to provide a solid and reliable background to refer to in this very fast advancing field of genetic research. I also believe that there should be a consultative body within the Muslim countries with diverse expertise (social, science, law, and religious scholars) to debate these crucial issues and put recommendations to decision-making bodies concerning this research within the spirit and purity of Islamic Sharia. Dr. Nasim Anwar suggested in one of his articles, when he referred to COMSTECH and ISESCO as organisations, which could form a platform that can deal with such pertinent ethical questions, and finding answers truly reflecting the Islamic point of view (Nasim, 1993).