A compilation of writings Complied By: Qudsiya Contractor Sumita Menon Ravi Duggal Centre for Enquiry into Health and Allied Themes Mumbai / Pune First Published in August, 2003 By Centre for Enquiry into Health and Allied Themes Survey No. 2804 & 2805 Aaram Society Road, Vakola, Santacruz (East) Mumbai - 400 055. Tel : 91-22-26147727 / 26132027 Fax : 22-26132039 E-mail : [email protected] Website : www.cehat.org Copies also available at Centre for Enquiry into Health and Allied Themes Flat No. 3&4 Aman Terrace Plot No. 140, Dahanukar Colony Kothrud, Pune – 411 029 Tel: 91-20-5452325 Phone Fax:20-5451413 Email: [email protected] D.T.P. by Margaret Rodrigues Covered Designed by Kiran Nagda & Poonam Dadlani Printed at Satam Udyog 203, Amit Industrial Estate, 61, Dr. S. S. Rao Road, Parel, Mumbai-400 012. Tel.: 24136171 Centre For Enquiry Into Health And Allied Themes (Research Centre Of Anusandhan Trust) CEHAT, in Hindi means “Health”. CEHAT, the research centre of Anusandhan Trust, stands for research, action, service and advocacy in health and allied themes. Socially relevant and rigorous academic health research and action at CEHAT is for the well being of the disadvantaged masses, for strengthening people’s health movements and for realising right to health care. Its insti-tutional structure acts as an interface between progressive people’s movements and academia. CEHAT’s objectives are to undertake socially relevant research and advocacy projects on various socio-political aspects of health; establish direct services and pro-grammes to demonstrate how health services can be made accessible equitably and ethically; disseminate information through databases and relevant publications, sup-ported by a well-stocked and specialised library and a documentation centre. We are a multi disciplinary team with training and experience in Medicine, Life Sciences, Economics, Social Sciences, Social Work, Journalism and Law. CEHAT’s projects are based on its ideological commitments and priorities, and are focused on four broad themes, (1) Health Services and Financing (2) Health Legislation, Ethics and Patients’ Rights, (3) Women’s Health, (4) Investigation and Treatment of Psycho-Social Trauma. An increasing part of this work is being done collaboratively and in partnership with other organisations and institutions. Editorial Son preference has been one of the most of Indian society and not to pass a moral evident manifestations of gender judgment on technology itself. The strategy discrimination in our society. With the was to enact a new law regulating advancement in medical science and diagnostic techniques without demanding technology sex selection has moved from a total ban, as it was felt that the detection female infanticide to sex selective of genetic abnormalities and other abortions. Clear evidence of this is that the pathological conditions was essential. sex ratio in the 0-6 age group declined sharply from 979 females per 1,000 males Through its course the campaign faced in 1981 to 945 per 1,000 in 1991 and several debates, dilemmas and further down to 927 per 1,000 in 2001. contradictions. The first challenge was to Addressing the issue of sex selection and regulate the practice of sex determination son preference has posed several without modifying the Medical challenges. It has been a long journey from Termination of Pregnancy Act (MTP Act). the time the campaign against sex This meant formulating a separate selection began to the present public legislation and hence the Maharashtra Act interest litigation to examine the Pre natal (Maharashtra Regulation of Use of Prenatal diagnostic tests (Regulation and Prohibition Diagnostic Techniques Act, 1988) came of Misuse) Act and its implementation. into being in 1988. While the Act was in place and some implementation in terms Historical Antecedents of licensing clinics and laboratories was done, the monitoring machinery was a The 1980s saw the rise of a campaign failure and no efforts at making the against the misuse of science and medical profession accountable were made. technology for the continuing Further while Maharashtra had an Act, the discrimination against women. In 1982, absence of legal provision in other states women’s groups protested against the provided opportunities for the medical results of a survey which indicated that an profession to expand business across the overwhelming majority of couples (90 border in Gujarat, Goa, Karnataka etc. After percent) who had volunteered for clinical experiences with the Maharashtra Act, it trials at the All India Institute of Medical was clear that doctors and providers of such Sciences in Delhi, were desirous of aborting technology were directly promoting sex- female foetuses once their sex was known. determination and hence national level This provided an impetus to begin a intervention was needed to curb this campaign to check the malpractice of sex- malpractice. What was also much debated determination using modern technologies. within the campaign was giving greater The Forum Against Sex Determination control over women’s bodies in the hands and Sex Pre-selection (FASDSP), an of the state even though it was in the organisation of activists from women, context of demand for greater state health and people’s science groups was protection for women’s rights. Nevertheless then formed in Bombay in 1985 with a view the demand for a national level legislation to preventing sex determination tests. The was made because efforts at getting the prime objective of the campaign that was medical profession to self-regulate and launched was to focus on the broader issue follow ethical principles in medical practice of discrimination against girls in all sectors had yielded no results. The intensified 1 campaign in the late eighties and early and CEHAT in 2000. The main objectives nineties lead to the formation of a of the PIL were firstly to shed light on the legislation, now known as the Pre Natal poor implementation of the Act and Diagnostic Tests (Regulation and secondly, to upgrade the Act itself, to keep Prohibition of Misuse) Act, 1994 (known as it at par with technological advancements the PNDT Act for short) which came into which were creating far more sophisticated force by Jan 1996. alternatives to carry out sex selection (the use of pre conception techniques such as Continuing Downslide the Ericsson method and Pre- implantation Despite the PNDT Act being in force Genetic Diagnosis or PGD for short). nationally the practice of sex determination One of the main concerns through the continued and the sharp decline witnessed campaign has been the issue of medical in the child (0-6 age group) sex ratio in 1991 ethics involved in the practice of sex was further down by 2001 Census clearly selection. With modernisation and speaking of the deep-rooted trend of son development there has been a rapid preference. Though the census has proliferation of diagnostic technology. reported an increase in overall sex ratio at Techniques such as amniocentesis in the the national level and also in majority of 80s or currently ultrasound are widely the districts at sub state level, as many as available and their use has become a 465 districts, constituting a whopping 79% routine that women are expected to go of the total 577 districts in the country, through in different trimesters of their have registered a decline in child sex ratio pregnancy. Doctors have been instrumental between 1991-2001. The declining trends in popularising several pre-natal diagnostic in child sex ratio have been glaring in techniques as methods for sex selection as Gujarat and Maharashtra where almost all they have a lot to gain economically from districts have registered a decline in child such a practice. The widespread knowledge sex ratio during the decade. Within about the availability of sex determination Maharashtra economically better off tests coupled with a strong preference for districts such as Aurangabad, Kolhapur, sons means good business for them. The and Sangli show the most adverse child sex medical associations in the country haven’t ratios of 884, 859 and 850 respectively. done much to check the unethical practice States such as Haryana, Punjab, Himachal of its members. Pradesh and Tamil Nadu also lag behind. In districts such as Ambala (Haryana) and There have been encouraging outcomes Amritsar (Punjab) the sex ratio in the 0-6 of the litigation. The first positive step age group is as low as 784 and 783 forward was a favourable interim respectively. judgement by the Supreme Court of May 4, 2001. The order called for all the state Such a dip clearly points towards governments to take necessary steps increasing incidence of female foeticide towards the implementation of the Act. The and infanticide. On the decline in sex ratio, government, that is the Dept. of Family the census commissioner himself observed Welfare too got energised and they issued that the alarming down slide could be an advertisement in national dailies saying attributed to the “recent medical support that it is a crime to carry out sex selection in terms of sex determination tests” and to and also activated the Central Supervisory “social cultural bias against the girl child”. Board by calling a meeting. This was a step The Legal Battle forward. The order also came down heavily on the medical profession and their The PNDT Act after being in force for 4 unethical practice. As a result the Indian years had not shown any evidence of Medical Association (IMA) at the national stopping the malpractice of sex- level made a turn around and issued a determination. On the contrary new warning to its members. The Federation of technologies relating to pre-conception sex Obstetrician and Gynaecologist Societies of selection were being promoted in the name India (FOGSI) too showed some concern of free choice. With this lack of concern on through its newsletter.