Transcript of Reproductive rights and privacy in India

hi everyone and welcome back to another privacy international podcast from our reproductive rights and privacy project I am Sarah and Allyson and I lead the reproductive rights project here at p.i today I'm speaking with Tasnim meua and Ambika tanden both of which work with the Center for Internet and Society in India I am speaking with him today about research they did with PI about data exploitation in section on reproductive rights in India I asked them to describe the landscape of reproductive rights in India specifically related to the ability to access contraception the ability to access abortion care and also the accessibility of medically accurate sexual health information we also talked about foreign organizations that work in the country to develop different technologies to provide information about health and information about different reproductive services so I hope you enjoyed this conversation with Tasnim and bika so i guess to begin could you maybe give an overview of reproductive rights in India and specifically related to access to contraceptives abortion care and medically accurate sexual health information okay so I'll start with this question in terms of reproductive rights from a legal perspective there is the MTP Act which was initially initially drafted in 1971 and has had several amendments since then and within the Act women have the right to reproductive autonomy over their body in terms of the choice that they make and they are given that right to have that autonomy as well as the right to privacy especially and that right to privacy has been emphasized since the 2017 judgement and so from a legal perspective nationally women are given the right to choose um what reproductive healthcare services they would undergo and in terms of abortion there are definitely restrictions on abortion and when they can seek it in terms of at what gestational period they can seek out abortions and so there are restrictions in terms of that but women are allowed to seek out contraception seek out abortions from a legal national perspective and that often doesn't translate into reality one because the national government kind of delegates the enforcement to state governments and so state governments have their own kind of rules and approval processes for public and private facilities in terms of what constitutes a safe and legal abortion and in addition there are also kind of different rules around contraception and if we look at Chennai for example in Tamil Nadu in 2005 when the state government decided at the national government and then the state government decided to make contraceptive pills available for people in Tamil Nadu there were groups who kind of rallied against that and lobbied against that saying that those pills induced abortion even though they didn't and because of that the state kind of redacted that bill and didn't allow those contraceptive pills to be sold anymore and so there's a lot of variation between states and so the legality of abortion of contraception and of the right of the woman to choose doesn't necessarily translate and there's a lot of misinformation around the legality of that and the lack of awareness among people who are supposed to be providing these services yeah I'll quickly add to what does name was saying so with the medical termination of pregnancy act or 1971 they're like Leslie mentioned there have been a few amendments and the original Act was was more limiting than the more recent amendments have have sort of allowed more space and more autonomy to women so for example one of the provisions that have been amended is that you can now seek abortion up to 24 weeks instead of the earlier 20 weeks and the issue though is that that still requires the approval of two medical practitioners and up to 12 weeks one medical practitioner that's lower than the two which was required earlier but it still places bodily autonomy in the hands of the medical practitioner so you still have to gather approval and like this name was saying there are enforcement issues because of that because it's not a right that you can sort of demand abortions as such you have to the provision of seeking approval means that there can be ad hoc requirements that come up locally at a given different medical practitioners and the other amendment that I wanted to highlight was that earlier the provision of seeking abortions for forced for sorry for the failure of contraception was only limited to married women and now that has been sort of broadened and includes all women within that scope so that's those are some positives from recent amendments as recent as March 2020 but but they do continue to be issues around bodily autonomy anyone who is under the age of 18 has to seek consent before they choose to have undergo any of these procedures or any of these services and that also creates more stigma for young married women especially if they undergo consensual sex because anyone under the age of 18 is considered a minor and so if they did go to a public facility it would be reported to the police I believe in so that also creates a sort of criminalization along with a legalization of like a sense of illegal ization around anyone under 18 who is seeking these services is that for both abortion and access to contraceptives I think that is what contraceptives in the sense that you are so any sex that you're having while under 18 is considered illegal so if you while there is no law around accessing contraceptives so you could have access but there is no right to have access to contraceptives as a minor and as an abortion seeker you are in all probability in all likelihood will be approaching a private provider because if you do approach a public medical provider then you will have to go through a legal procedure it will become a medical legal case so in the case of an under 18 percent seeking contraceptives there would be police so I was interviewing women and providers in across major hospitals in Delhi government hospitals and one of the issues that came up around consent was that the providers were hesitant to provide to go ahead and give approval for abortions for anyone that they thought was it was so unmarried women are going through multiple screening levels and so one of the criteria that we had to screen women was they thought they looked literate or had and honest ending of what they were talking about so and this provision and this criteria was being applied regardless of the age of the woman so I had approached and and asked about unmarried women who were say around 25 26 so they said that if it's someone like you who looks like they know what they're talking about then we would go ahead and take that risk and and this was the terminology that was used so there's a sense of risk around giving approval to unmarried women who were seeking abortions and they wouldn't do that if it was the case that if this is a woman seemed like she was either illiterate or or was not able to explain very well what the circumstances around her abortion were then they would involve the police and it would become a medical legal case again can you talk about how sort of different forms of data exploitive tech are being developed to delay or curtail access to reproductive health services including access to contraception and access to abortion care in terms of data exploitative technology I think in general with technology we came to kind of two conclusions which is that the integration of data exploitative technology within reproductive healthcare demonstrates that the provision and restriction of reproductive healthcare services are not mutually exclusive especially in the case of data based technologies and because there are a variety of database technologies in a variety of ways in which data is collected from women within the healthcare system all these private public and even non-governmental actors who are responsible for collecting this data in exchange for promoting sort of women's autonomy and women's empowerment are kind of pursuing those objectives through very narrow lenses and ways in which that are kind of burst to a majority of the population especially women who are from rural areas or women who are highly stigmatized for seeking out these services and another another kind of conclusion that we came to is that the policy around database data exploitative technologies or the lack thereof actually is also contributes to kind of exacerbating the existing inequities in creating new inequities for a lot of women who are seeking out these services so some of the examples that our research talks about are the different databases that have been created for provision via Adha and so there so there was initially the MCTS which is the mother child tracking system which was implemented nationally in 2011 I believe and that has slowly been linked to the national attire system so that anytime a woman does try to seek out the service or is trying to see was trying to access maternal benefits for example has to provide her a higher number and her other card when going to a public facility and the data that is linked to her on her is or the data that is required for her to seek out the services then link to her other and then centralized and so and because there is all really no data protection policies and data privacy policies in place for that data specifically it is very vulnerable to the system and those who have access to it and so and because there are have been instances of data leaks women are made Boehner bill to the fact that you know their data could be leaked and this is especially dangerous for women who would be stigmatized for seeking out these services for young women unmarried women and people who would again would be stigmatized for seeing out the service and then there's also the integration of ICT and how and and apps such as dr. insta and Proctor and even apps that are estimates based services that are kind of implemented by not only domestic actors but also international actors and designed by international actors because a lot of these data exploitive technologies are seen as something that works well with development narratives as well international development narratives as well as how India wants to see a reproductive healthcare goal within a digital India kind of landscape and so when when women or when anyone kind of tries to seek out healthcare services from these services from these apps or from these M'Baye story based initiatives mobile based and internet-based initiatives then sometimes that requires again them to input data and input information about themselves that isn't necessarily protected and especially when these kind of spaces or advertisers save spaces or places where women can seek out services that would normally be considered taboo or that they wouldn't be able to access otherwise that creates a really kind of unsafe space for a lot of women and creates a notion of safety that is could easily could that isn't necessarily true and then in terms of going back to the MCTS an ad hire and the databases that are being created a lot of these databases will eventually the government wants to see them kind of inform AI and artifice artificial intelligence within reproductive healthcare and with with the AI services they want these databases to kind of inform what the AI services do obviously because AI needs a lot of data to work and a lot of the data that is being fed into these AI systems is primarily based around pregnancy and fertility data and doesn't really include a wide range of services that people seek out especially because a lot of people who do seek out these services don't necessarily want it to be reported on there are tires so they go to private facilities or they go to facilities that wouldn't ask for that and so a lot of the data around the number of abortions that are being performed doesn't exist 1 & 2 the data that does exist around pregnancy and fertility for these AI systems is extremely quantified and medicalized and tend created under this biomedical ization biotechnology kind of lens and so the event of pregnancy itself is quantified for example so the AI system would see it as pregnancy being this number of visits or this number of postnatal immunizations for the child or this number of whatever kind of metric that is supposed to define pregnancy so not only does it really narrow the definition of what reproductive health is but it also quantifies it too in a really formulaic and inapplicable way for a lot of women and so the way that these data exploitative technologies are working while they're trying to you know create accessible reproductive healthcare services for women across you know across a lot of different geographical areas um it's not necessarily doing that and in fact is actually creating an unsafe space and creating allowing a kind of feeding data into some procedure that isn't necessarily built to protect and hold that much data and is also through data kind of redefining and narrowing what reproductive healthcare and reproductive health care services really mean hmm really interesting just highlight some issues in addition to what the scheme's talk about with regards to the first is with the narrowing down of the definition of reproductive health this has been an issue that has been pervasive with in the development sector and the governance of reproductive health more broadly as well and they really come out when these systems are then being data fide and there is a very sort of narrow lens through which reproductive healthcare is being defined so there are areas such as our gender-based violence for example that have been seen as more contentious and are therefore not included in the space of reproductive health even though they do have a direct impact on these and the other issue in addition to privacy is that there are targets that are set for a lot of these metrics or indicators so institutional deliveries is is there is a target based approach around that is a target target based approach around sterilization and the basically bringing in both men and women to sterilize across rural parts of the country more starkly and and please when these targets are not being met these are essentially monitored through the data systems that have been set up in place and so the issue there is that these are not optimized to bring more autonomy to women or to broaden the service space for women but rather to meet the or monitor the targets that have been set up in a top-down manner by governments and international donors so with sterilization this was an example that I have is from Pradesh just last month where the Chief Minister had announced that health providers would lose their jobs if they are not able to bring in a certain amount of men to be sterilized by the end of the reporting period which was in March and there was so much backlash around this that it this notification had to be retracted but it is something that continues to happen in in the health system across the country most people that I think will listen to this and watch it will have an understanding of what occurs and the mother-child tracking system they mentioned but could you maybe briefly describe those systems and how the to interact and if there are other initiatives related to reproductive health that feed into Adar as well and just kind of expand more on the potential risks that come with that centralization of information yeah so the other odd is India's biometric identification program it was launched in 2009 and since then has been integrated across government services and welfare and as part of that the first link to reproductive health and the other odd is that the sort of provision - or the law that is regulating sex selective abortion is takes the approach of the regulating technologies that are able to cater to sex selective abortion so ultrasound technology essentially and the regulation happens in a manner that providers have to register themselves with the government and they have to they have to procure a license and after that they have to take identification of some kind when women are coming in for aboard for ultrasounds and this is both private and public providers so at that stage they demand identification and there has been sort of an ad hoc or an informal approach where providers are sort of leaning towards asking for the Adha and if the patient does not have an author then they may not necessarily ask for other identification so they could be exclusion at that stage itself and the second major link is due to maternity benefits so all benefits across the board including a number of state and central maternity benefits are linked with the other and you have to authenticate yourself you have to authenticate your identity if you want to avail of these or you also have to have an a bank account which is seeded with the other which will receive these payments in case of a direct benefit transfer which is the case with most paternity benefits so you could then the exclusions could then be happening at two levels you could either not receive a services at all which has been the case in a few documented cases across the country or you could not receive your benefits you could not be eligible for receiving a benefit which you would otherwise have received if you had another so that's the exclusion is the first step and then if you do get included within these programs and the centralization of information is the other issue and the mother and child tracking system which is which basically tracks maternal health indicators with maternal and child health indicators in India it's it's a monitoring system that has been now slowly in a phased manner been rolled out across the country it essentially collects all of the information about the services that a woman would have received when they go to a public provider and each visit that they make is recorded on a physical card that each woman receives which is called the MCT card and they they are physically record these so the woman is able to keep track of the visits that they need to make and the health provider is able to as well so that is the primary function of it and in that sense it's been highly lauded it's been successful in being able to attract those services and being able to send reminders so Asha how workers whether the on ground health workers are able to use the system to be able to physically map out the services and send reminders in some cases by physically visiting the patient they are able to send remind remind them of the services that they are able to avail off and that includes both antenatal and postnatal services during a pregnancy but this has in a phased manner since 2011 been linked with the Arthur as well and all of this information is then being linked to a central repository which is being handled by the unique identification Authority of India the UID AI and this then there's a sort of 360-degree surveillance model where the government has stated that they want information from birth to death about each citizen or resident that they are who has another card and so there are several issues that come up around privacy and surveillance as well as around data leaks and the security of these programs as well could you briefly describe also the the apps that you mentioned doctor insta for example and the other exact you abandon in your research sure so doctor insta was started by so I know the thing interesting thing about these apps and the actors behind them is that they're not sister the government electors are not necessarily private facilities and they're not necessarily got non-governmental actors they're individuals and so doctor and so is that individuals from India them itself and the Indian diaspora so dr. insta was created by someone was living in America and was actually a a bank executive and an entrepreneur entrepreneur who work is a lot of entrepreneurial innovation kind of foundations in California and he in 2015 moved back to India and decided to invest a lot of his savings in what is called dr. insa which is essentially a telemedicine service that is supposed to be targeted towards busy individuals who want to maintain a busy schedule and also be able to seek out health services and so what happens is patients and doctors register for this service it's an app and you can essentially get doctor consultations on the go and doctor insa is funded because because of the because of this dog this business mans experience it's funded a lot by angel investors and venture capitalists in India and in the US and if you partnered with a doctor in India itself to kind of create the service and start the consultations and get a team of doctors to be behind it that's dr. instant and crack toe is another app that was created by two engineering students in their last year and who lived in Bangalore and the first it was created because one of them kind of wanted to get second opinions on his father's health issues and also wanted to evaluate the quality of the health practitioner that he was in contact with to kind of ensure that his father is getting the best care possible so he along with his classmate decided to create practive which is an app that allows people to review and rate doctors and allows people to get second opinions if they say we should do that except a lot of the revenue that they get from this app as it comes from doctors themselves who maybe want to have a higher rating and so the way that the business model works kind of boosts doctors ratings without them actually being reviewed by patients and in order like for them to be sustainable from a business perspective they they aren't necessarily meeting their initial objective and so in that sense hmm it doesn't necessarily it's not necessarily linked to reproductive health exactly but it creates a system where doctors are kind of allowed to continue not necessarily providing the best care for providing complete information and still being rated well or reviewed well based on the business model that this app runs on so the next thing I want to ask was around the approval process of obtaining an abortion and I guess from basically you said earlier about contraception as well if you're under 18 and what the effect of that approval process has had on pregnant people from your research I understood that there is a need to have it like a guardian approval of access to abortion and the government's involved as well as RNG could talk through what those processes are and if in sort of the effect that that would have on the person seeking the service the case that you would need to have a guardian or your husband or whoever it is apart from the patient themselves sort of sign off on the abortion but it does end up being the case in certain certain categories of women so one vulnerable group that we highlight it already was unmarried women and just because of those or infantilization of unmarried women there has been again a sort of local requirement local in the sense informal it's not it's not in the law but there has been I did find instances in Delhi in major hospitals of providers asking for consent of the partners as well and in the case that the woman is not able to provide their other hard card for example the the other card that they do need to have some identification so they still you can provide your husband's other I thought you can provide your guardian or your parents other card as well and this then again becomes a source of concern for unmarried women if they are not able to disclose at home for example that they are seeking an abortion and are and do not have an argh''-ha card then they will essentially not be able to get an abortion act a public provider and this is also the case with benefits so in the case of accessing benefits it's a more sort of formal process so you do have to give the details for both husband and wife so you can see there that all of these benefits are not only targeted towards on the narrowly defined scope of mothers within reproductive health but also in a hetero patriarchal family setup so you need to have a husband and your you're only able to your you need to have the husband's consent you need to have that details you need they need to have another heart cuts the entire the husband and wife need to provide both the set of details and you can only avail of benefits for up to two children so that's the sort of family planning approach that's being taken through exclusion as well so could you talk about sort of four organizations that have a presence in India that were sexual reproductive health care and and what they're working on at the moment in the country sure so there's a lot of foreign organizations operate operating in India because like I mentioned before this is this kind of reproductive health care provision is a big development international development narrative so some of the organizations that we've talked about include the United Population Fund life matters worldwide the Bill and Melinda Gates Foundation BBC media action wellthank and USAID Jesse United States Agency for International Development um and it's not that these organizations necessarily have been explicit or not all of these organizations have an explicit aunty reproductive prisons but they leave out a lot of aspects of reproductive health care which enable their presence to act in some sort of anti reproductive kind of rights and autonomy fashion so um the one that is really explicitly kind of anti-abortion anti contraceptive is life butters worldwide and unlike the rest of these foundations it's not a big foundation it's not funded by a lot of money it relies on donations individual donations and it's a religious based organization that started in Michigan in the US and it has a lot of partners worldwide and really their goal is to educate based on the interpretation of the Christian faith and what it is that they want to kind of convey in terms of abortions and contraceptions and the like and so they operate through their missions through churches through local churches and through pregnancy centers and they partner with local hospitals and local churches and prayer groups and they don't directly provide any services or they can't actively stop any services are being delivered but the way they choose to operate is to educate and to inform and whatever they understand to be educating and informing and they work with local hospitals to cut gotta gather groups and kind of relay their message so that's kind of the one organization that has an explicit inter productive presence and is unlike the rest in terms of its size and their objectives the United Population Fund is associated with the UN and it defines itself as an organization that ensures that every pregnancy is wanted in every childbirth is safe and every young person's potential is fulfilled and so they have kind of an emphasis on family planning which is really the narrative of reproductive health in India in general and so they advocate for the inclusion of reproductive rights for adolescents and different national strategies that kind of take Maternal Child and Adolescent Health into account and they advocate a lot against child marriage and dowry violence and they promote adolescent reproductive health but again it does not necessarily address the totality of reproductive health and everything that they do is really focused more on maternal and child's house and kind of protecting adolescents from getting married too early and the Bill and Melinda Gates BBC Media Action World Bank all these organizations also have very similar kind of programs and initiatives where they focus on family planning and on one end and then they focus on maternal and child health on the other it's kind of a two pronged approach for many of these organizations and especially for Bill and Melinda Gates and BBC media action they they focus a lot on technological solutions and technological initiatives so there's for example PBC Media Action in partnership with the Ministry of Health and Family Welfare in India created an app called kale curry which was directed towards real women to kind of relay information about fertility and pregnancy and panty and postnatal care for up to two years to women so that they can monitor their health in their child's house child's health um but again a lot of these initiatives and a lot of these organizations really work towards pregnancy is put towards your productive health that's centered around pregnancy and towards that centered around maternity less so around kind of spreading awareness and information around all the different all the other services that women have access to and women have a right to and that's especially the case with USAID and I mean especially with USAID that's really kind of caught up in the geopolitics of of relationships over the geopolitics of kind of the tensions that are going on in the US and that's translated to the services and the kind of development that development nishan is that they have in India and worldwide and the best example of that is the gag rule um which states that which was has been enacted by multiple administration's and has been connected by the Trump administration again and really is just a rule that kind of states if organizations that do have USAID funding provide services or provide information about services or abortion services that they will not be eligible for USAID funding anymore and so they're actively working to restrict services to abortion and kind of do not do not allow for their organs to provide the totality of services and information that they could provide and so again that's creating a gap from an international perspective domestically that is weighing down on the barriers that women already face and is bringing reproductive health as it has always been brought into into like these patriarchal systems that kind of continue to limit access to women and especially women who would be stigmatized for excellence accessing these services in the first place thank you so much I just want to test there's anything else you wanted to add about work that you're doing at the moment that's related to this or anything that's coming up in the country that's you wanted to mention with regards to both those questions of where is the country headed and the work that we are trying to develop as well is really focused around public health emergencies and the sort of access to contraception abortion and the right to privacy in those contexts as well and there have already been organizations so hidden pockets I mentioned is one that's doing advocacy and is trying to build a community driven initiatives around ensuring that there is information at least about a contraception and abortion in different parts of the country but these will necessarily become issues where we may are not able to access these services or are not able to travel to areas that are able to provide these and that's not just the case with with abortion in particular but also say with HIV and the Arte sort of treatment that happens with HIV that's been that there have been several initiatives that are trying to deal with that as well because people are not able to access these treatments and these long-term treatments anymore so I think that's the sort of direction that will get ya this is also going to be taking okay well thank you guys so much for your time it was it was great to hear about the research you've done and great to speak with you thank you likewise thank you so much