Introduction

The Max Mueller Bhavan, New Delhi, along with the All India Institute of Medical Sciences (AIIMS) and the International Centre for Genetic Engineering & Biotechnology, New Delhi, organised this very rewarding symposium at the Board Room, AIIMS, on 27-28 October 1995

Genetic research

Professor Sharat Chandra (Indian Institute of Science, Bangalore), chairperson at the first session, set the ball rolling by pointing out that the first hundred patients seeking fetal sonography at AIIMS were women with female offspring. They requested prenatal diagnosis of fetal sex despite the absence of genetic abnormalities in their families. Recent advances in genetics are, and will be, used for their non-medical applications for emotional and cultural reasons. The yearning for baby boys is an example. Is it ethically wrong to help families to have children of the desired sex?

He also touched upon the vexed question, ‘Who owns information?’ Should a carrier of disease, detected during a scientific study, be informed? Can individuals demand that all data on themselves be deleted from all databases? Can data obtained during a study be used in a court of law? Since it is now possible to amplify genetic material supplied for a test or study thanks to techniques such as polymerase chain reaction, a huge of amount of material will soon be collected by laboratories. Who owns this? Who owns cell lines? Can they be sold? Is informed consent of the donor necessary? Can life forms be patented.

As the distinction between academia and commerce gets ever more nebulous and as workers become increasingly secretive and concentrate on the commercial consequences of research, we need to confront a whole range of questions.

Dr. Hans-Martin Sass (Professor of Philosophy, Ruhr-Universitat, Germany and Kennedy Institute of Ethics, Washington). pleaded for differentiation between patents (of which he disapproved) and ‘breeder’s privileges’ (which are justified). Recognition by society and. appropriate rewards to the discoverer are necessary to ensure discoveries that further medical care, enlarge the supply of food, help improve standards of quality control and efficacy, especially of new life forms and, in general, make life worth living, especially for the sick and poor.

He voiced a theme that he was to return to again and again during the symposium. In dealing with the new challenges thrown up by biotechnology as with all complex situations in biomedicine, we must also involve lawyers, priests, teachers and the public at large so as to empower the people and enable them to make appropriate choices.

Dr. Ishwar C. Verma (AIIMS) noted that non-directive counseling (where the patient is provided information but is not led towards one or the other decision) often fails in India as the family keeps asking the therapist to decide. Families often do not understand what is said to them either because the explanation is too technical or was in a language not familiar to the patient (e. g. explanation offered in Hindi to a Nepali).

Dr. Anton Leist (Professor of Philosophy, University of Zurich) felt that as a scientist, the doctor must present all relevant data to the patient and family after establishing personal rapport with them. He must then also offer his own recommendation making it clear that this is his personal view. The final decision can then be made by the patient.

Mr. R. Srinivasan (retired Secretary, Ministry of Health, Government of India) pointed out that in India we have a wide variation of backgrounds of those seeking health care in India from that of those providing it, making all medical consultations encounters between two widely differing cultures. The anthropological distance traveled by the patient when he comes to a doctor is, at times, interpreted by the latter as evidence of disease. This diversity of cultures makes it imperative that we learn to carry on meaningful dialogues with cultural strangers. We must also ensure fairness of access and sufficiency of service.. Distributive justice is still far from being a reality, the chief obstacle being hubris in those providing health care.

Dr. Rita Kielstein (Professor of Internal Medicine, University of Magdeburg, Germany) emphasised that the mother must remain the key person in making decisions on the life of the fetus with inherited disease. Mr. Srinivasan was quick to point out that the reality in India does not permit a mother to be a moral agent who can influence decision on whether her fetus with hereditary disease should be killed. The decision is usually made by her husband and in-laws and enforced on her.

Assisted reproductive technology

Dr. P. C. Anand Kumar (Hope Infertility Clinic, Bangalore) quoted Richard McCormick’s statement (1981) that the morally good is in danger of being equated with what is technologically feasible, He spoke of the national guidelines on various aspects of reproductive technology including quality control, ensuring absence of bacteria in sperm stored in banks, ensuring uninterrupted supply of electricity and true informed consent. His concluding statement was thought-provoking: ‘If discipline is not enforced, mediocre, unimaginative professionals will emerge from substandard private medical institutions. ‘

The law in Switzerland, as enunciated by Dr. Leist, showed how far we need to travel to reach an international standard. Switzerland requires all semen banks to maintain records on all donations of semen. This helps them match donor to the family in physical characteristics so that the child does not stand out as an anomaly. It also enables the resultant offspring, when 16 years or older, to obtain details on the biological father and, if so desired, meet him. The law also restricts the supply of semen to couples where the social father is alive and the marriage is intact.

Dr. Indira Hinduja (Jaslok Hospital, Bombay) commented on the fact that in India, even when the defect causing infertility lies in the husband, the social stigma is borne by the wife who cannot or will not proclaim her normalcy. Artificial insemination is therefore carried out in great secrecy. On the other hand, donation of the egg is publicly proclaimed as the husband’s manhood is not under a cloud. She also commented on the high cost of the donated egg- Rs.25,000 or more. The cost for in vitro fertilisation of eggs is Rs. 100,000 per cycle with a 30% chance of success.

Dr. Punit Bedi (consultant obstetrician, New Delhi) felt that infertility necessitating assisted reproduction is an economic disease. Informed consent for such therapy must include a detailed explanation of all costs and the chances of failure. Dishonest directive counseling has made families sell whatever little they possess in the hope of begetting a child. He was not optimistic about any form of audit by any agency in the current situation where case rccords are hardly ever maintained by any practitioner. There is thus a total lack of accountability. This is likely to persist as assisted pregnancy involves a lot of money and the need to generate large profits must, inevitably, lead to unethical practices.

Professor D. Banerjee (Lal Bahadur Shastri National Academy of Administration) cautioned against relying on the law and legal processes. The law is what it does and not what it says. It is a subset of the social system and, with the general erosion of character, is likely to prove ineffective until standards are raised. It makes good sense to strengthen autoregulation by the profession with senior members taking the lead. The law should be reserved only for the recalcitrant minority. Unfortunately, at present, the ethical are in a minority. Dr. Hans-Martin Sass agreed. Whilst the law is a powerful agency, in matters medical, especially when they concern making love and babies, empowering the people through the media, schools, colleges, philosophers, religious leaders- is more likely to prove effective.

Ethics of dealing with death

Dr. Ajit Bane (VIMHANS, New Delhi) recalled Yudisthir’s observation that it is most astonishing how man, aware of his mortality, continues to feel that he can cheat death and does all he can to attain this goal.

Dr. Chaturvedi Badrinath (philosopher, New Delhi) recalled the Hindu philosophical view that death is merely a step in the continuum or birth, life, death and rebirth. To one who understands this unity between life and death, the latter holds no terror. He counseled physicians against playing God.

Speaking on the medical duty to save life, Sunil Pandya (K. E. M. Hospital, Bombay) felt that it must be tempered by respecting the autonomy of the will of the patient and doing all one can to cnsure a meaningful life. The law in India does not permit the doctor to respect a living will or do-not-resuscitate order by the patient. In doing so, the law lags behind ethics.

He also pointed to the need for nationally acceptable criteria for certification of intensive care units and admission to them. One criterion for admission could be ‘correctable abnormality that threatens life, with high expectation of a meaningful life after treatment’. We also need a consensus on practical matters within the intensive care unit. When the intensive care unit is already full of seriously ill patients and yet another such patient is brought in, what should be the criteria for deciding that his need for a bed is greater than that of patients already within and how should we choose the person to be sent out? What should be the criteria for stopping life support systems? One such criterion could be irreversible failure of vital organs and systems.

We must differentiate between the preservation and saving of life and its unnatural prolongation. The latter is irrational in an individual permanently deprived of his senses because it prolongs the agony of family and friends, consumes scarce resources and, in its extreme forms leads to such attempts as cryogenic preservation of the brain and an attitude that commands death to wait.

Dr. P. M. Bakshi (former Director, Indian Law Institute, New Delhi) discussed the legal aspects of a doctor’s act of stopping life support systems in patients who are brain dead. The law, at present, uses the definition of brain death exclusively for the purpose of organ transplants. He felt, however, that if a case was brought before the judges against such a doctor, they are likely to use the definition in the Organ Transplant Act in making their judgment. Whilst unlawful causation of death is murder, the bona fide act of a doctor in shutting off life support systems in a brain dead person following the family’s directive or the patient’s living will is unlikely to attract any punishment.

Dr. Chicot Vas (FIAMC, Bombay), speaking on euthanasia, pointed out that the right to die does not permit the seeking of death as one pleases. It rcfcrs to the right of the individual to dctermine the quality and manner of death, peacefully and with dignity.

Dr. Leist referred to the right to suicide in the Netherlands. If the individual is incapable of committing suicide, he has the right to seek the help of a doctor for the purpose. This stand is based on the principle of autonomy of the individual. This is, however, a slippery slope and needs legal controls and protocols in place. Speaking on the living will, Dr. Saas pointed out that it must be individualised according to values, wishes and visions of the patient irrespective of machines or the ability to pay. When devising a model living will it is necessary to ensure that the patient is in the driving seat. (Dr. List : ‘What if the patient doesn’t want to drive?’ Dr. Saas: The default position based on what is sanctioned by society then comes into play.) Dr. Saas discussed the various models of the living will- directive, proxy and value profile (which provides a checklist and offers scvcral narrative examples which help the patient form his own directive) and showed the advantages of the latter.

Discussing organ donations, Dr. R. R. Kishore (Ministry of Health, Govcrnment of India) recommended a tightly knit definition of death to be applied under any circumstance and not just with reference to donation of organs.(Professor D. Banerjea: The moment you define something, you also confine. It is better to find functional solutions.) Dr. Kishore also spoke of the need for guidelines on when life support systems can be turned off. (Dr. Saas: Such guidelines should deal not only with brain death but also with the pcrsistcnt vegetative state where the living will is often of crucial importance.) We also need a public debate on euthanasia in India. Finally, the public needs to bc educated on the living will. Once public awareness has been created, draft forms can distributed in hospitals and the manncr in which they are received and understood can be studied.

Political and social issues

Wide ranging discussion was permitted in the final session. The chairperson, Dr. M. G. K. Menon, pointed out that if the professions do not regulate thcmselves or address themselves to the task of organising themselves as a community with values and ethics, they will, perforce, be subjected to external rcgulation. The Consumer Protection Act is an example of such external regulation. Instead of fighting negative aspects, medical and scientific professions should concentrate on putting out positive information.

Interested readers should get in touch with him.

(This report is reproduced here through the courtesy of the Editor, National Medical Journal of India.)

Conclusion

Dr. Tilmann Waldraf (Director, Max Mueller Bhavan, New Delhi) and his team- of whom special mention must be made of Ms. Petra Matusche- deserve kudos for organising this exccllent multidisciplinary meeting. In the closing session he requested guidance on how succeeding meetings should be organised. In particular he asked for suggestions on topics to be discussed (with special emphasis on topics relevant to India). Should such meetings be between Indian workers or should foreign experts be invited? Can there be international collaboration on medicaI ethics? Which are the specific areas where the Max Mueller Bhavan can help?