Invesitigating Reproductive Ethics in India
Bronwyn Parry has just received a grant of 230,000 pounds to undertake a collaborate international project that investigates the production, consumption and regulation of regulation of assisted reproduction services in rural and urban centres within India.
The Project, which is funded by the Wellcome’s Trust’s International Bioethics Research fund will be undertaken with Dr. Amar Jesani of the Indian Centre for Studies in Ethics and Rights, with clinical reproductive specialists in the UK ((Professor Alison Murdoch and Dr. Meenakshi Choudhary of Newcastle University’s Centre for Life) and with Indian ART specialist consultants Professor Kedar of Hiranandani Hospital, Mumbai and Dr. Anita Gour of the Genesis Fertility Centre at S.K. Soni Hospital, Jaipur who have agreed to host the project.
Legal analysis will be undertaken by the eminent legal scholars Professor Jaya Segade, Vice Principal of the ILS Law College, Pune, India and a specialist in Indian reproductive law and Dr. James Lawford Davies, a British legal specialist with extensive experience in the drafting of context-specific ART regulations globally.
The research associate for the project is Dr. Gauri Raje who has extensive experience undertaking social scientific research on health care, development and reproductive rights issues in India and the UK. The project will run from May 2012 until May 2015.
Project Context and Aims
Assisted reproductive technologies (ART) which have a half century long history of application in advanced economies are now increasingly being rolled out into developing country contexts by public and private sector health providers.
India, despite being a populous country, is also one in which incidences of primary and secondary infertility are high, at three and eight percent respectively (Widge and Cleland, 2009) with between 13 and 19 million couples experiencing infertility at any one time (Indian Council of Medical Research 2005).
The particular cultural sensitivities that attend childlessness in India (which are characterised by unequal gender relations) include profound social stigmatization, economic disadvantage, abandonment and domestic violence (Das Gupta et.al. 1995, Singh et.al. 1996, Mulgoonkar, 2001). These have been employed to rationalise a ‘reproductive rights’ agenda that promotes the provision of ‘affordable’ infertility management technologies including gestational surrogacy in resource-poor settings often with highly questionable outcomes (Sama, 2007; Bardale, 2009; Saravanan, 2010; Sarojini, 2011).
The development and application of sophisticated ART technologies in the West has been accompanied by an equally sophisticated and continually refined set of ethical and regulatory protocols, as evidenced, for example in the workings of the HFEA in Britain (Braude and Muhammed, 2003).
This has not been the case in India where rapidly proliferating assisted reproductive services have operated relatively free of regulatory or ethical oversight (Sama, 2008). It is imagined that the elaboration of India’s recent National Guidelines for Accreditation, Supervision & Regulation of ART Clinics in India (2005) which forms the basis of the proposed Assisted Reproductive Technology Regulation Bill (2008, but still awaiting ratification) will remedy this, however, surprisingly, neither takes explicit account of the specific cultural practices that shape the provision and consumption of ART services in rural or urban areas of India, such as, for example the demand for late age IVF services, caste matching or son preferencing.
Very significantly, the new Indian Bill also emulates the UK’s recent shift towards the liberalisation of existing ART regulation. As Dickenson (2009:9) has noted the Coalition government’s proposed abolition of the HFEA by 2014 has prompted the agency to “soften its regulatory touch” by, for example, allowing further financial inducements to be offered to donors and by actively incentivising prospective consumer/patients. It has been argued (Sama, 2009) that the draft Indian legislation may similarly act to facilitate the emergence and sustainment of a robust private sector ART industry in India and its progressive penetration in poorer sectors of the economy, at the expense of the health and well being of the donors and recipients of those services.
ART services have historically been accessed in India by middle and upper class couples who can afford them, but are, increasingly, being made available by private sector providers to rural constituencies and the urban poor who find them “mostly unaffordable, of varying quality and costs, [with] low success rates” (Widge and Cleland 2009). They are, nevertheless, motivated, if not pressured, to access them by compelling cultural considerations, the implications of which for service provision and consumption are not presently addressed by the proposed legislation.
The aims of this research project are therefore, threefold. Firstly; to undertake a detailed empirical investigation into the culturally specific motivations for undertaking assisted reproduction in India in two selected cases study sites (metropolitan Mumbai and rural Rajasthan); secondly to assess how these motivations shape delivery of clinical practice in both settings; and thirdly to assess how effectively the Guidelines and new Assisted Reproductive Technology Regulation Bill identify and address ethical issues that have a distinct cultural basis. The ultimate objective is to employ this analysis to highlight the inherent and practical risks associated with ‘ethical universalism’.
This is here evidenced in the National Guidelines’ unproblematic importation of normative Western models of ethical governance. Designed primarily to make Indian regulations broadly commensurate with those found abroad in order to facilitate ART tourism they consequently ignore the significant local and cultural sensitivities associated with domestic ART provision.
As Parks (2009:20) argues “reproductive technologies are neither inherently liberating nor entirely oppressive: we can only understand their potential and effects by considering how they are actually taken up within a culture. The internal contradictions, tensions and inconsistencies within ART and the way it is addressed within the law demands a dialectic that resists a simple reductivist understanding”.
By undertaking empirical research on the Indian cultural reality in relation to ART provision and the ethical issues germane to that, we will have the means to demonstrate how the Guidelines and Bill might be profitably revised to reflect and generate what Reissman (2005) describes as a more culturally specific ‘ethics-in-context’ approach, delivering a much needed re-balancing of the regulatory framework.
1) What are the specific cultural motivations that impel individuals and couples to seek access to ART services in rural and urban localities in India? To what extent are these motivations comparable or distinct? What is the market penetration of ART into rural communities and amongst the urban poor and what implications does this have for client access?
2) How are particular constituencies of clients informed about ART services in urban and rural areas and enrolled into this market? How and in what ways is the delivery of ART provision in hospitals in both localities shaped by the cultural expectations, beliefs or conventional practices of clients or clinicians, and with what ethical implications?
3) To what extent do the existing National Guidelines for Accreditation, Supervision & Regulation of ART Clinics in India and the Draft ART Bill take account of the cultural specificities of ART provision in India and the ethical issues to which they give rise?
4) To what degree has the socio-legal drafting of the National Guidelines been informed by normative Western or neo-liberal models of ethical governance for reproductive care?
5) In what ways might the existing National Guidelines and ART Bill be profitably revised to more effectively address local cultural sensitivities and to strengthen ethical oversight of ART provision