pp. 455-459 in
Bioethics in Asia
Editors: Norio Fujiki and Darryl R. J. Macer, Ph.D.
Eubios Ethics Institute
Copyright 2000, Eubios Ethics Institute
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F34. Some Bioethical Issues in Human Genetics
Indera P. Singh.
University of Delhi, Delhi, India.
Nuclear Energy, Information Technology and Gene Technology are the most important technologies of our times with different cultural, national and international approaches. Their moral and cultural control and acceptability requires moral assessment at the level of (i) individual, (ii) familial , (iii) religious , (iv) societal , (v) national , and (vi) international . National and international guidelines must protect individual human and civil rights, i.e. they must respect different religious and cultural attitudes towards manipulation of life, concepts of disease and disorders, risk in human experimentation and the identification of the appropriate agencies to make moral ethics, based on available therapeutic technologies. Specific cultural risks of human germ-line research include: (1) The waste and destruction of human germ-line of human life, (2) Different religious, philosophical and cultural concepts of the moral status of the pre-embryo, (3) Moral assessment of technical issues of stability of manipulated forms, and predictability of expression.
Research on early forms of human life
Some religions and cultures hold the view that fertilized eggs which do not develop in to human persons, nevertheless, represent the dignity of human life and must be respected the same way as the living. Such persons do not approve of germ-line research and consider such research as cruel, immoral and unacceptable. But they have no right to impose their religious or metaphysical views about the moral status of gametes, oocytes and pre-embryos on those who feel that there is a moral duty of healing the sick and their therapy. Another moral issue for those who reject human germ-line therapy will be whether they will accept for themselves and their offspring prospective positive results of such research. Would they like to expose their prospective offspring to deadly diseases like Lesch-Nyhan syndrome or Huntington's Chorea when therapy is available, no matter how it was achieved? But for those groups who do not ascribe full human and civil rights to the early forms of human life, there is no moral problem in full scale human germ-line therapy research. In fact, they feel a strong moral duty to further the boundaries of research and therapy of the severest forms of genetic disorders. Most individuals and cultures will find germ-line repair preferable to abortion or to severe suffering during their short life spans. Pre-implantation diagnosis is morally more acceptable than abortion. Sex selection by any form of sex determination is globally extremely controversial.
Who should be the moral agents? The primary moral agents for the well being, health and quality of life of children should be their mothers. Kielstein and Sass have argued 'that woman in all cultures should be prime moral agents for reproductive choice regarding germ-line therapy.' Other agents responsible for decision-making are spouse, the broader family, physicians and ethicists. National and international bodies have responsibility towards offspring and parental concepts of disorders, disease and health. The prospective individual must be protected by national and international agencies from being manipulated (by their mother/family, society, religion, etc.) against their own interest. However, the state should not intervene in core issues of responsible parenting.
Response to infertility
The desire to have a child is a basic human urge. Is the desire biological or social? The desire to have children is often driven by culture. There are social pressures to have children as the family and friends expect a couple to start a family soon after marriage. Woman who failed to provide an heir were divorced or abandoned in many societies. Often men resorted to a second marriage to get an heir. Among Hindus, the son performs certain religious rites. Barren woman is looked down upon by society. "The man without progeny is like a tree that yields no shade, has no branches , which has no fruits and is devoid of any pleasing odour" - (Charaka Samhita).
Is there a natural right to reproduce by artificial means? The main purpose of sexual intercourse is the conception and begetting of children. Does it mean that not to assist infertile couples to reproduce is to deny a human right and not fulfilling the purpose of the sex act? Can one provide a natural right by artificial means?
There has been a spurt of growth of newer technologies of reproduction. All of them raise ethical issues. They are expensive and involve tests, hospitalization and number of trials until pregnancy is finally achieved. Artificial insemination may be by the husband or by the donor. In artificial insemination by husband, the offspring has the gametes from both parents. It is necessary to get the consent of both the parties before the procedure is carried out. The husband acquires legal rights and obligations as a natural father. The doctor must screen the donor adequately, as there is the possibility that the doctor may be sued if the donor is not screened sufficiently for genetic defects and diseases or if the husband's consent is not obtained.
According to Islamic point of view, artificial insemination may be done with the husband's semen but not that of another donor. It is only within the marriage contract that the progeny should be conceived. This applied to other assisted reproductive procedure also, like in vitro fertilization. Such technologies are permitted only between the husband and the wife. The permissibility applies only as long as the marriage is valid. Many ethical problems may arise. Both husband and wife must be freely consenting to in vitro fertilization and embryo transfer.
There are always excess ova fertilized even after a number of them (3-4) have been placed in the uterus to ensure greater success. What to do with excess embryos? Who will decide about them? There is a high risk of abnormalities and defects in children produced by laboratory fertilization. There is the responsibility of the doctor, who may be charged with medical and scientific negligence. The couple may claim damages. Can damages be claimed by the child also? It has been held that if doctors create life and exact a fee for their services, they should assume responsibility that no disability will occur.
Many ethical problems may arise or arise because after all 'test tube babies are babies'. There is need for control and legislation with respect to the embryo.
Surrogacy is the practice whereby one woman carries a child for another with the intention that "the child should be handed over after birth". This arrangement as defined is in the form of a contract. But the validity of such a contract is questionable as either of the party may revoke it. The carrying woman may develop such close affinity to the child that she refuses to give up the child. The presence of congenital defects and other defects may lead to its non-acceptance by the commissioning couple. This actually is considered as commercialization (rent -a-womb). Bearing children for financial consideration should be condemned as strongly as possible. Surrogacy is a threat to the institution of marriage, treats poor women as commodities and exploits them as vehicles to satisfy whims and fancies of the rich.
There are two choices when children are produced by donation of gamete: tell the truth or keep it a secret forever, or till the child attains majority. In case of artificial insemination by donor, anonymity is maintained.
Many organs and tissues are being transplanted. The organs and tissues may be obtained from living persons or from cadavers. The methods, which are being used to meet the increasing demand of organs, raise many ethical issues.
Live donors in India are mostly poor and do so for monetary gain. The rich (Indian and foreign) are always prepared to pay. A few people including doctors have raised their voice against this unethical trafficking in organs. All kidney transplants in India are illegal. Can money received from the 'sale' of the organs be considered as contributing to donors' 'health'? On a social point of view, we find it difficult to accept human organs at par with other goods. 'Brain death' refers to irreversible change occurring in the brain stem and there is no likelihood of the person surviving. The organs can be kept in reasonable good shape by artificial perfusion and ventilation. Where law permits, organs can be removed quickly to be transplanted into waiting patients. Even in such cases, the patients or relatives may not be agreeable to the removal of the organs. There are people who consider the human body inviolable even in death. The Confucian book of Filial Piety speaks of keeping the dead body intact. It is necessary to have the consent of the person, given prior to death or of the closest relatives agreeing to the procedure of removal of the organ.
The Union Territory of Delhi has some regulations for use of eyes, eardrums and bones. The state of Maharashtra has regulations for the transfer of kidneys and cornea. The Government of India has made a Transplantation of Human Organs Act, 1994, regulating transfer of organs.
Fetal tissues are being transplanted. Persons suffering from Parkinsonism are supposed to benefit from the transplants of fetal brain. It gives the deficient neurotransmitter. Use of fetal tissues also raises many ethical issues. Women may be willing to conceive to produce and grow fetuses, which will then be 'harvested' for monetary considerations to give the fetal tissues for various purposes including transplant of tissues. The human body and its parts cannot be the subject of commercial transactions.
AIDS and Ethical Issues
When a 'healthy' would-be donor is tested positive for HIV, should he be told of the result? Has the donor the right to be informed or not? Yet he/she should be aware, so as to prevent him or her from infecting others. Informing a person may not help in preventing the spread of infection, as it is very difficult to change the sexual behavior of a person. A professional donor cannot be stopped from selling blood at another commercial blood bank. The infected person has to endure all negative consequences as it may lead to social discrimination.
It is also unethical for a doctor to refuse to treat or examine a patient for the only reason that the patient's condition may put the doctor at personal risk.
Genetic engineering and recombinant techniques can help in making good the deficiencies. The desired gene can be positive or negative. The objective of eugenics is to produce an ideal person but who is an ideal person? Often the idea is to have such outstanding persons contribute to a sperm bank. Artificial insemination is done with ovum selected from woman with 'desirable' qualities. But who will judge the characteristics truly worthy in the human and how the society is going to make choice about such a person?
Ethical Questions in Human Genetics
Progress in methods in manipulation of cell calls for progress is the development and support of an ethos of manipulation. A general ban on manipulation would be moral and cultural malpractice:
* Recognition of the moral status of the unborn human life. Dilemma between the pro-life and pro-choice groups.
* Pro-life groups recognize the fertilized egg to be protected like any other person. They won't accept determinative research in the early embryo.
* They do not accept embryo research but accept benefits from such research. Many bio-ethicists recommend that the benefits should not be used, but they may be used for dying and suffering patients and when one might feel there is no need to care how the remedies are obtained.
* Once a technology has been developed for a good purpose it can be used for moral as well as immoral purposes (Axe created to clear jungles and use for cutting down forest).
* A technology once developed will mushroom ever within moral communities into unrecognized and unwarranted usages.
* The needs of developing countries are so great that the rich world should show greater understanding, brotherhood and concern for the development of the best possible technologies.
* Human manipulation of nature mirrors human self-understanding, values and morals; the clue to avoid risk in technology is to strengthen individual and cultural competence in moral risk assessment and personal responsibility.
* New knowledge and new forms of manipulation challenges human race and human culture with wider dimensions of responsibility and risk competence. They require development of an ethos and ethics of responsibility. One cannot agree with those ethicists who ask for a ban or severe control of the development and use of new technology.
In fact regulation carries greater moral risks and hazards than an individual's options to choose and to follow his or her conscience.
The human genome is the common heritage of humankind and humankind's link to other forms of life. Traditional moral principles such as autonomy, privacy, justice, equity, literacy, and responsibility have to be redefined in the light of benefits, risks and uncertainty of applying genetic knowledge. Moral and cultural traditions play an important role in shaping individual and society's competence to deal with new challenges. Traditions may not be used in an individual way, as traditions also contain antiquated customs, which have to be cut off.
There are three different forms of introducing moral traditions into discussing moral assessment:
(i) The authoritative and regulative way formed by the factors of hierarchical value assessment.
(ii) The educative and exhortative way in which the individual conscience seeks guidance from the wisdom of the past guidance from God in interpreting classical texts.
(iii) The discursive and adjuvenative way of making the best use of traditional forms of moral risk management. The authoritative model includes the suppression of the individual conscience and the promotion of double standards. The discursive model fits best into the scenario of moral assessment by educated and risk competent individuals. It is the model of the future but it needs to make good use of the treasures hidden in the moral history of our cultures.
(iv) Cultural traditions in different societies are different and so are the moral solutions, which they support or not support.
Consensus for prima facie Human Rights and Obligations
Moral issues related to the basics of life are: (1) Death, (2) Pain, (3) Liberty, (4) Justice.
We shall find more cross-cultural consensus. In fact the protection of the basic human rights is an issue of solidarity within pluralistic societies and cultures. These basic rights can be called pre-cultural rights and obligations because they have to be respected in all cultures of human dignity.
Regulations vs. Individual Responsibility
Individual responsibility cannot be compromised and individuals should make moral choices wherever religious leaders, ethicists, lawyers and politicians disagree on crucial questions like:
(i) When unborn life should be protected , or
(ii) when a human life is over ,
(iii) whether to give or receive organs ,
(iv) whether or not to differentiate between procreative and recreative forms of sex ,
(v) whether to have or not have children and how many?
The principle of subsidiarity must be employed within the processes of cross-cultural dialogues and inter-cultural conflict solution within the global village. It must support cultural attitudes and the cultural heritage, which has its own set of rules, goals and obligations, as long as these traditions do not violate individual human and civil rights. Despite all variations and differences in cultures a basic commonality persists. Cultural changes lead to change in ethos also.
The individual conscience and risk management has to be given its due and does not threaten truth or society. As Spinoza observed, on the other hand, that destruction of the individual conscience may lead to destructive dominance. The principle of subsidiarity should be used in a global dimension to honor and challenge the multitude of vision, cultures and heritage of humankind to make this world a more human, more natural and more civilized place.
There have to be rules and regulations to handle machines, technologies, biotechnologies and the technicalities of regulation and enforcement's . Human and civil rights have to be protected by law, police, courts and government.
One should anticipate high technical risks especially while chartering into new and unknown territory such as the expected risks of importing dangerous microbes from the moon or to strive for highest possible safety standards in early DNA recombination. There are moral and technical limits to regulation of technology in order to avoid abuse. There is a multitude of risk involved in biotechnology - moral, technical and risk in the calculation of risk.
There is no conflict relating to global issues as no culture says life is not sacred. For example, vaccination is now considered important and is given due importance, although it was not acceptable in the beginning. However, we should not forget that ethics is based on cultures, which are not static but are always changing. With the advancement of new technologies moral values also change.
Bioethics in India is almost non-existent. There is lack of knowledge relating to issues of gene therapy accompanied by lack of discussion about these issues at various levels. There is need for a broad public education system in heath literacy and individual health responsibility. Such education programs should be introduced into the curricula at school level and included at the college/universities level also. A center for ethics in sciences in general and genetic and medical ethics in particular needs to be established, because of the pluralistic nature of the Indian society which is multicultural, multireligious and multi-ethnic.
Genetic discoveries and new forms of life should not be patented for ethical and economic reasons. Also, the rights of the sick and the poor to adequate treatment of the highest attainable standards as well as the benefits of biomedical research should be recognized.
We must master the benefits and risks of genetic knowledge as well as the power of manipulation to strengthen the ethos and ethics of responsibility in support of individual self-determination, cultural diversity and political stability.
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