Managing abortion research

ABORTION remains a sensitive matter in most countries, receiving considerable international attention not only as a public health concern but also as an ethical/moral/religious issue. Public discussion on abortion has either centred on declining sex ratios and sex selective abortion or on the proliferation of clinics across urban India. Unfortunately, there is much less public debate on abortion related morbidity and mortality despite several national programmes and campaigns for safe motherhood.

As Bela Ganatra points out in her study, ‘Abortion is also a singularly difficult topic to research; even legal "abortion seeking" remains a private, sensitive act with negative moral and emotional connotations that sets it apart from other reproductive health treatment seeking. It is not surprising then that much of available literature in India focuses on the secondary analysis of official data or on the study of easily accessible urban hospital populations.’¹ Therefore, attempting a nationwide research study on quantitative and qualitative aspects of abortion – from both the provider’s as well as women’s perspective was not easy.

Given the volatile nature of this issue, especially in a world where ethnic, religious and community identities have gained greater legitimacy in politics, researchers and activists have shied away from initiating a public debate on abortion. Some argue that this may push the clock back and women will face a setback in reproductive rights. This concern acquired a sense of urgency in light of the US government’s threat to withdraw support for research on abortion and support to international (including multilateral agencies like UNFPA) organizations that work on abortion and related issues.

The post-ICPD Cairo (September 1994) conference period created a new window of opportunity in India. The Government of India’s decision in the post Cairo phase (1996) to introduce a more comprehensive Reproductive and Child Health (RCH) programme in place of vertical safe motherhood, child survival and family planning programmes gave women’s health advocates an opportunity to re-establish the importance of a holistic approach.

 

 

Donors supporting the government’s efforts (World Bank, European Community, Swedish International Development Cooperation Agency, DANIDA and DFID) highlight the importance of looking at abortion-related mortality and morbidity as a part of the RCH package. This created a favourable climate in the country to examine the issue from different dimensions and work towards making abortion safe. In the last six years the Government of India and various state governments too have attempted to develop district-specific plans for RCH programmes. These efforts have been noteworthy and administrators are trying to grapple with hitherto unexplored public policy issues. It may be some years before the effort will bear fruit, but given the present public policy climate in the country, the trend is positive.

The 2001 Census jolted the government and civil society alike – an alarming decline in the juvenile sex ratio from 971 in 1981 to 945 in 1991 and 927 in 2001 made national as well as international headlines. The release of provisional Census 2001 figures was followed by a series of national as well as regional meetings to understand this alarming trend and evolve policy instruments to reverse it. This led to a renewed interest in enforcing The Prenatal Diagnostic Techniques (Regulation and Prevention of Misuse) Act (PNDT Act) enacted in 1994 by the Government of India for the regulation of the use of prenatal diagnostic techniques and prevent its misuse for the purpose of prenatal sex determination leading to female foeticide.

In the last 15 years women’s health advocates have tried to draw the attention of policy-makers and administrators to a range of issues related to abortion in order to improve the availability, safety and use of services, including:

* abortion perceived as an extension of the government’s population stabilization programme;

* tendency to use abortion as yet another means of family planning;

* growing trend in many areas towards sex selective abortion;

* inadequate safe abortion facilities within reach of the majority of poor women in rural and urban areas;

* dearth of medically approved abortion providers and registered facilities;

* inadequacy of post-abortion family planning counselling and services; and

* abortion not perceived as a women’s health issue among policy-makers and service providers.

 

 

Given the above trend in India, there was a feeling that it was an opportune time to initiate a nationwide debate on abortion. While the climate was favourable to initiate debate among key stakeholders, a lack of reliable information, wide regional variations, rural-urban differences and a thin research base made it difficult for policy-makers, administrators and women’s health advocates to develop strategic interventions. There is little dialogue between different stakeholders and it is not uncommon to see registered service providers, unregistered/untrained practitioners, women’s health advocates, population control lobby, public health advocates and others working at cross-purposes.

To fill the gap in our understanding of the ground reality with respect to induced abortion in India and to create evidence-based body of knowledge, the Abortion Assessment Project – India (AAP-I) was designed as a multicentric research study.² This study was designed in collaboration with the Ministry of Health and Family Welfare, Government of India and funded jointly by Ford Foundation, Rockefeller Foundation and MacArthur Foundation. The project was housed in Cehat, Mumbai and HealthWatch, Jaipur. The main objectives of the project were:

* review government policy towards abortion care, availability of funds, its flow and policy/programme environment in the country, including family planning and abortion care;

* assess and analyze abortion services, including organization, management, facilities, technology, registration, training, certification and utilization in the public and private sector;

* study user perspectives with special focus on women’s perceptions of quality, availability, accessibility (including barriers to utilization of safe abortion facilities), confidentiality, consent, post-abortion contraception and attitude of service providers;

* study social, economic and cultural factors that influence decision making: impact of changing social values, male responsibility, family dynamics and decision-making;

* document costing and finance issues related to the above; and

* estimate the rate of abortion, resultant morbidity and mortality and reasons for induced abortion.

 

 

At the outset, it was acknowledged that abortion is not only a sensitive issue, but that a vast number of service providers are not registered. Therefore, gaining their confidence would be important. Given the prevalent political and administrative climate in the country, certification/registration is contentious; unregistered providers may not be willing to talk unless the researchers ensure complete confidentiality. This necessitates that the study adhere to strict ethical criteria and ensure confidentiality, crucial not only to gain the confidence of service providers, but also create a non-threatening environment for inquiry.

Researchers and social activists point out that given the secrecy and often ‘shame’ associated with abortion, women do not speak freely. However, if a local woman’s group or a heath worker has gained the confidence of the community, women are more willing to talk about their abortion experience. Therefore, the study did not rely on researchers alone, but tried to work with social groups that have established a rapport with women. We were aware of the need to design data/information gathering tools to facilitate data collection in a gentle and non-judgemental manner.

 

 

A technical advisory committee consisting of researchers, providers and nominees of GOI and ICMR was constituted to guide and monitor the project. All proposals, research protocols and ethical guidelines were reviewed and approved by the TAC. The following stakeholders were represented in the TAC:³ Policy-makers and administrators who are involved in the decision-making process related to medical standards for abortion care (MOHFW, GOI and ICMR); medical community represented by FOGSI; family planning service providers (Parivar Seva Sanstha); community-based organizations and women’s health advocates; social science and medical researchers; and demographers and family planning advocates (members of the population lobby).

 

 

The TAC was of the unanimous view that AAP-I should adhere to strict ethical guidelines. While medical research in India is normally undertaken within the framework of Indian Council of Medical Research’s ethical guidelines, this practice is not prevalent in social science research. The TAC was of the view that this project should mark a departure and adopt a code of ethics for research on abortion and related issues.

To this end, the TAC recommended formation of an Ethics Committee to:⁴ review all proposals and protocols from an ethics standpoint; provide assistance and training on ethical aspects to IEC of partner institutions and researchers whenever needed; monitor ethical concerns through review of reports submitted by researchers and through field visits as and when required; provide inputs on ethics in project workshops and meetings; and address ethical dilemmas faced by researchers and act as a sounding board.

On commencement of the project, all the collaborating institutions came together and agreed on a code of ethics to be followed during the course of the study and in dissemination of study findings. Among the important protocols agreed upon were informed consent, protecting the identity of the respondent – abortion seekers as well as abortion care providers, data to be presented only in a tabulated form, and narratives used only after the identity of the respondent and his/her area is camouflaged. An important decision taken was that the data collected through this study would be available for use of researchers, women’s health advocates, the government and any other stakeholder. To this end, tabulated data and the reports will be made available on the Cehat website. A separate budget provision was made to ensure the implementation of the code of ethics developed by Cehat and discussed and finalized by the TAC.

 

 

Given the prevailing situation of abortion services and the changing perception and values of the community, the national assessment study covered not only a wide geographic area but also tried to capture the various dimensions of the problem. There are five dimensions to this study.

An overview paper on policy related issues, series of working papers based on existing data/research; multi-centric facility survey in six states, namely Rajasthan, Haryana, Kerala, Madhya Pradesh, Mizoram and Orissa; qualitative studies on specific issues to compliment the multicentric studies. A total of nine qualitative studies were commissioned; community based studies (among other issues) to estimate abortion rate in Maharashtra and Tamil Nadu; and dissemination and advocacy.

It was hoped that a five-pronged approach would capture the complex situation as it obtains on the ground, provide policy-makers, administrators and medical professionals valuable insights into abortion care and help identify areas for public policy intervention and advocacy.

The project that commenced in August 2000 is now nearing completion. Managing such a vast project with multiple partners was a challenging experience. Multicentric and multi-stakeholder research is not only about gathering and analyzing data, it is also about keeping a diverse group together, managing people and managing the politics of different agendas and people holding different views. The legitimacy of such an ambitious project ultimately depends on its ability to carry people along and keep them together.

Given that almost all the members of the two key project management committees – TAC and ECG – are professionals with a tight work schedule, bringing them together for meetings, ensuring that them informed and keeping the government is kept in the loop was indeed an uphill task. Equally, balancing the priorities of professional researchers/academicians with that of social activists was not easy. Unlike large national surveys like NHFS, many of our partners were not professional researchers. Building the research capabilities of activist groups who were partners in the qualitative studies demanded some handholding. As we are reaching the end, we realize that it was not always possible to ensure good quality reports – even though the qualitative information gathered was fairly good.

 

Footnotes:

1. Bela Ganatra. ‘Abortion research in India: What we know and what we need to know’, in Radhika Ramasubban and Shireen J. Jejeebhoy (eds.) Women’s Reproductive Health in India. Rawat Publications, Jaipur and New Delhi, 2000.

2. The study was designed in 1998-99 by a team led by Vimala Ramachandran, then a visiting faculty at IIHMR, Jaipur. The late Dr. Ruksekesh Maru, then Director, The Indian Institute of Health Management Research, Jaipur (IIHMR) negotiated a planning grant with Michael Koenig of Ford Foundation to prepare a proposal for an abortion assessment project after consulting important stakeholders in India.

3. TAC Members: Kamini Rao (FOGSI), Leela Visaria (HealthWatch), Manisha Gupte (Masum), Padmini Swaminathan (MIDS), R.N. Gupta (ICMR), Ravi Duggal (Cehat), Dr Saramma Thomas Mathai (Consultant in Material & Child Health), Sudarshan Iyengar (GIDR), Sudha Tiwari (Parivar Seva Sanstha), Thelma Narayan (Community Health Cell), Vimala Ramachandran (Health-Watch) and Narika Namshum (MOHFW, GOI).

4. Ethics Consultative Group: Dr Sudarshan Iyengar (representing the TAC), Dr S.V. Joga Rao (National Law School of India University, Bangalore), Dr Sanjay Gupte (Chairperson, Ethics and Medico-legal Committee, FOGSI, Pune), Dr Vasantha Muthuswami (expert on Bio-medical Ethics DDG(SG), Indian Council of Medical Research, New Delhi), Dr Ritu Priya (researcher and academician, Jawaharlal Nehru University, New Delhi), Padma Prakash (Deputy Editor, Economic and Political Weekly, Mumbai), Dr V.R. Muraleedharan (researcher and academician, Department of Humanities, Indian Institute of Technology, Chennai) and Dr Amar Jesani (independent researcher and ethicist, Mumbai).