pp. 209-214 in
Bioethics in Asia
Editors: Norio Fujiki and Darryl R. J. Macer, Ph.D.
Eubios Ethics Institute
Copyright 2000, Eubios Ethics Institute
All commercial rights reserved. This publication may be reproduced for limited educational or academic use, however please enquire with the author.
6.3. Ethical Issues of the Human Genome Project: An Islamic Perspective
Advisor Science, COMSTECH Secretariat, Islamabad, Pakistan
The sequencing of the three billion base pairs which constitute the total human genome has led to a series of ethical questions. These issues have been discussed at great length and also extensively documented. Such discussions also include consideration of the use ofsuch techniques as gene therapy, diagnosis of diseases at early age and susceptibility of individuals to a given disease as a result of the hereditary genetic make-up. Information resulting from the HGP raises serious questions about the limits to privacy and genetic discrimination used by employers to recruit individuals showing susceptibility to occupational hazards in the workplace are just two examples.
The answers to such questions will also be greatly influenced by the prevailing religious beliefs and moral values of different societies. Nearly one billion inhabitants of the globe are Muslims and such societies have also taken an interest in the ethical, legal and social implications of the HGP. The present paper will discuss in detail these issues from an Islamic perspective.
Moral pronouncements and Ethical values are intimately related to the beliefs and composition of any society. Within the Muslim world consisting of nearly twenty percent of the total human population the ethical issues will obviously be examined in the light of the teachings of Holy Quran. For Muslims there are two major sources of guidance, firstly the holy book which gives a complete code of life including economic social, legal and ethical principles and secondly Hadith which represents the sayings and the way of life of the holy prophet (PBUH). It is in the light of these above two sources that all ethical dilemas including the complex questions related to the HGP have to be examined.
Islam is an Arabic word (which means two root-words): one Salm, meaning peace and the other Silm, meaning submission. Islam stands for "a commitment to surrender one's will to the Will of God" and thus to be at peace with the Creator and with all that has been created by Him. It is through submission to the Will of God that peace is brought about. Harmonization of human will with the Will of God leads to the harmonization of different spheres of life under an all-embracing ideal.
Islam is a worldview and an outlook on life. It is based on the recognition of the unity of the Creator and of our submission to His will. Everything originates from the One God, and every one is ultimately responsible to Him. Thus the unity of the Creator has as its corollary the Oneness of His creation. Distinctions of race, colour, caste, wealth and power disappear our relation with other persons assumes total equality by virtue of the common Creator. Henceforth our mission becomes dedication worship and obedience, to our creator; the Creator becomes our purpose in life.
The Quran has depicted a path, the Straight Path (Sirat al-Mustaqim), which when followed revolutionizes the whole of life. It brings about a transformation in character and galvanizes us into action. This action takes the form of purification of the self, and then unceasing effort to establish the laws of God on earth, resulting in a new order based on truth, justice, virtue and goodness. It is at once a faith and a way of life, a religion and a social order, a doctrine and a code of conduct, a set of values and principles and a social movement to realize them in history.
From 'Towards Understanding Islam' Sayyid Abula-al-Maududi
At the outset it is important to highlight some of the salient features, beliefs and guiding principles which will serve as the basis for dealing with these issues. A few verses from the holy Quran in English translation have been included to serve as guidelines for drawing conclusions related to ethical questions.
I seek refuge of the Allah from devil worthy to be stoned In the name of Allah, the Beneficent, the Merciful
Separa: I Surah: Fatihah (The Opening)
Praise be to Allah, Lord of the Worlds:
The Beneficent, the Merciful:
Owner of the Day of Judgement.
Thee (alone) we worship; Thee (alone) we ask for help.
Show us the straight path:
The path of those whom Thou hast favoured; Not (the path) of those who earn Thine anger nor of those who go astray.
Separa: XXX Surah: Al-Ikhlas (The Unity)
Say: he is Allah, the One!
Allah, the eternally Besought of all!
He begetteth not nor was begotten
An there is none comparable unto Him
Separa: XXX Surah: Al-‘Asr (The Declining Day)
By the declining day,
Lo! man is in a state of loss,
Save those who believe and do good works, and exhort one another to truth exhort one another to endurance
Separa: XXX Surah: Al-Nas (Mankind)
Say: I seek refuge in the Lord of mankind,
The king of mankind,
The God of manking,
From the evil of the sneaking whisperer,
Who whispereth in the hearts of mankind,
Of the jinn and of mankind
Separa: XXX Surah: Al-‘Alaq (The Clot)
Read: In the name of thy Lord who createth,
Createth man from a clot
Read: And thy Lord is the Most Bountenous,
Who teacheth by the pen,
Teacheth man that which he knew not
Nay, but verily man is rebellious
That he thinketh himself independent!
Lo! unto they Lord is the return
Hast thou seen him who dissuadeth
A slave when he prayeth?
Hast thou seen if he (relieth) on the guidance (of Allah)
Or enjoineth piety?
Hast thou seen if he dienieth (Allah’s guidance) and is froward?
Is he then unaware that Allah seeth?
Nay, but if he cease not, We will seize him by the forelock_
The lying, sinful forelock_
Then let him call upon his henchmen!
We will call the guards of hell
Nay! Obey not thou him. but prostrate thyself, and draw near (unto Allah)
Separa III First ten Ayyats of the Surah: Al-Imran (The Family of ‘Imran)
In the name of Allah, the Beneficent, the Merciful
Alif. Lam, Mim
Allah! There is no God save Him, the Alive, the Eternal
He hath revealed unto thee (Muhammad) the Scripture with truth, confirming that which was (revealed) before it, even as He revealed the Torah and the Gospel:
Aforetime, for a guidance to mankind; and hath revelead the Criterion (of right and wrong). Lo! those who disbelieve the revelations of Allah, theirs will be a heavy doom. Allah is Mighty, Able to Requite (the wrong).
Lo! nothing in the earth or in the heavens is hidden from Allah
He it is who fassioneth you in the wombs as pleaseth Him. There is no god save Him, the Almighty, the Wise
He it is Who hath revealed unto thee (Muhammad) the Scripture wherein are clear revelations_They are the substance of the Book_and others (which are) allegorical.But those in whose hearts is doubt pursue, forsooth, that which is allegorical seeking (to cause) dissension by seeking to explain it. None knoweth its explanation save Allah. And those who are of sound instruction say: We believe therein; the whole is from our Lord; but only men of understanding really heedOur Lord! Cause not our hearts to stray after Thou hast guided us, and bestow upon us mercy from They Presence. Lo! Thou, only thou art the Bestower Our Lord! it is Thou Who gatherest mankind together to a Day of which there is no doubt. Lo! Allah faileth not to keep the trust (On that day) neither the riches nor the progeny of those who disbelieve will aught avail them with Allah. they will be fuel for fire:
The other fact that needs to be emphasized is that the approach that has been taken by our religious scholars and institutes of learning has always been to take well defined specific issues, examine it in detail and decide the question by issuing a "Fatwa". The most recent example of this is the recent workshop dealing with "Ethical Implications of use of ART for Treatment of Human Infertilities" some of the conclusions reached at and recommendations made are summarised below:
1. Assisted reproduction technique is permissible only within the context of marriage between a man and woman who are not separated by divorce or death, and in case there is a medical requirement for adopting such a method of treatment.
2. The sperm provided for reproduction should be obtained from the husband concerned. The ovum to be fertilized should be obtained from the wife.
3. The carrier of the fetus should be the wife giving the ovum fertilized by her husband's sperm.
4. No reproduction is permissible with the help of a third party in the form of a donated zygote oval cell, fetus or uterus.
5. Assisted reproduction techniques are only permissible in the case which provide medical justification.
As is evident from the presentations made in the present symposium and the discussions that followed that there is now a wealth of information that has accumulated related to the HGP. I have only chosen the following few questions here. It is however my earnest hope that discussing these questions briefly will illustrate the approach and attitude that the Muslim Societies are likely to take in dealing with issues related to the HGP.
1. Questions about the limits to privacy.
2. Issues related to genetic discrimination used by employers to recruit individuals who show greater resistance and lack susceptibility to occupational hazards the workplace. Will this provide an excuse to the employers to become less vigilant and responsible in maintaining a cleaner and hazard free environment.
3. Genetic screening for carriers
4. 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.
Without doubt this is the most ambitious project ever undertaken by the global community of Biologists. This project does infact truly reflect the nature of Twenty first century Biology. Walter Gilbert has quite appropriately referred to this project as the Holy Grail of Molecular Biology, others have considered this to be the foundation for a new science, a different kind of research and big time biology.
For the Human Genome Project the objective is to obtain a complete nucleotide sequence consisting of 3 billion base pairs. This will provide us with much deeper insights into the molecular basis of genetic diseases, diagnosis and treatment. The information so gathered raises serious questions about the limits to privacy, issues related to genetic discrimination used by employers to recruit individuals who show greater resistance and lack susceptibility to occupational hazards in the workplace. Will this provide an excuse to the employers to become less vigilant and responsible in maintaining a cleaner and hazard free environment. There are other questions, related to genetic screening for carriers, social implications in choices for marriage partners, and susceptibility to such diseases as cancer and cardiovascular problems. For individuals destined to live under this constant fear, the psychosocial implications of such information will also need to be critically examined.
To my knowledge in the Muslim world our scholars have taken very little interest in this project. There is another factor which needs to be kept in mind and that is the likely breakthroughs that one can anticipate. This is obviously something virtually impossible to predict. The pace at which molecular mysteries would be unraveled and thus lead to greater understanding of diseases like cancer can not be predicted Events since the discovery of the structure of DNA in 1953 clearly show that this kind of speculation may not be too productive. However one thing is obvious which is that biotechnology is here to stay!
Will all this lead to transgenic humans! Where is the limit? Will this dramatically change the course of future human evolution, upset and disturb the present natural balance of the ecosystem? These are serious issues which certainly merit critical evaluation. The need for the Muslim religious scholars, research scientists and policy makers is to collectively and continually ponder over these questions and take steps to effectively deal with the situation!
Can organizations like COMSTECH and ISESCO be a platform to accomplish the goals discussed above? How does one go about asking the pertinent ethical questions and finding answers truly reflecting the Islamic point of view?
Another fact that needs to be highlighted is the general lack of awareness within the Muslim world about the enormous importance of this project. This observation is supported by the simple fact that within the Human Genome Organisation (HUGO) there are only four Islamic countries represented with a total membership of fourteen scientists. Similarly the dismal state of Science and Technology within the Muslim countries is also well known and clearly reflected in the observation that the entire Muslim world contributes 1.033 percent to the international literature as opposed to 1.059 and 1.64 by small European countries like Belgium and Switzerland.
In terms of scientific research in this area, the only laboratory known internationally which is engaged in the Human Genome Diversity Project is the Biomedical and Genetic Engineering Division of Dr. A.Q. Khan Research Laboratories in Islamabad, Pakistan. This laboratory is very actively engaged in studying genome diversity in different populations.
The efforts of this laboratory are currently in three major directions. (1) The complete analysis of HLA Class I and Class II haplotypes in the 9 major Pakistani ethnic groups. This work will be of immense importance in organ transplantation work in Pakistan. A preliminary report has been published in the Proceedings on the 12th International Histocompatibility Workshop Conference (St. Malo and Paris 1997) (2) Population genetics using Y-chromosome and microsatellite polymorphisms and (3) Ascertainment of new disease causing genes in the Pakistani population. This is facilitated by the existence of large multi-generational families where consanguineous marriages have been practiced for centuries leading to the segregation of the disease genes at frequencies higher than in other parts of the world. To date, more than 7 new genetic disease loci have been found in Pakistani patients for diseases such as deafness, blindness and other retinal degeneration syndromes. The determination of defects in specific genes in a patient will be essential for treatment by gene therapy when this procedure becomes commonly applicable.
However inspite of this rather bleak scenario in terms of scientific research and our contributions to the knowledge pool for understanding genomic diversity, molecular basis of human genetic diseases and the completed DNA sequence of the 3 billion base pairs in the present day and age of Internet global communications and flow of information the ethical questions will be serious challenges for every society. It is this fact that makes the present symposium so important. It provides a unique platform for a mutual exchange of ideas. The real challenge for us is to continue to strengthen the infrastructure needed to meaningfully answer these existing questions and be prepared to deal with the new ones. In my view the most effective way of coping with this is to have a continuous and ongoing dialogue between scientists and religious scholars which is unfortunately still sadly lacking in most societies including the Muslim world.
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1. Genethics The Ethics of Engineering Life David Suzuki & Peter Knudtson National Bestsellers
2. Bioethics A Textbook of Issues George H. Kieffer Addison-Wesley Publishing Company
3. Mapping Our Genes Genome Projects: How Big, How Fast? Congress of the United States, Office of Technology Assessment The Johns Hopkins University Press
4. Wonderwoman And Superman The Ethics of Human Biotechnology John Harris, Oxford Press
5. How Brave A New World Dilemmas in Bioethics Richard A. McCormick, S.J. Doubleday & Company, Inc., New York
6. Genome The story of our Astonishing Attempt to Map all the Genes in the Human Body, Jerry E. Bishop and Michael Waldholz Touchstone Simon & Schuster, New York
7. Bioethics In Human Reproduction Research In The Muslim World Prof. Dr. Gamal I. Serour, El Walid Press
8. Ethical Guidelines For Human Reproduction Research In The Muslim World, Prof. Dr. Gamal I. Serour, El Walid Press
9. The Code Of Codes Scientific and Social issues in the Human Genome Project., Daniel J. Kevles and Leroy Hood, Harvard University Press, UK. 1992
10. Bioethics For The People By The People Darryl R.J. Macer, Eubios Ethics Institute 1994
11. The Language Of The Genes Steve Jones, Flamingo (Harper-Collins Publishers) 1994
12. Medical Ethics In The Contemporary Era Shabih H. Zaidi, Maqbool H. Jafary, Unaiza Niaz Anwar and Shaukat Ali Jawaid, Royal Book Co. Karachi, (Pakistan) 1995
13. Interactable Neurological Disorders, Human Genome Research, Research and Society, eds., Norio Fujiki and Darryl R.J. Macer, Eubios Ethics Institute 1994.
14. Human Genome Research And Society, eds., Norio Fujiki and Darryl R.J. Macer, Eubios Ethics Institute 1992.
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