Tag Archive for women’s health

Health Care: Technology on Trial?

Health care India

Opposing vaccine technology and clinical trials instead of ensuring efficacy and transparency in their process is like throwing the baby out with the bathwater

By Vineeta Bal

Vaccination is one of the pillars for cost effective preventive approaches for primary health care. Following the World Health Organisation (WHO) recommendation for expanded programme of immunisation of all children to reduce child mortality, in 1978, India introduced six childhood vaccines, Bacillus Calmette-Guerin (BCG), DPT (Diphtheria, Pertussis, and Tetanus), polio and typhoid. In 1985 under universal immunisation programme, the measles vaccine was added. Subsequently there have been further additions.

Though vaccination coverage in India is only around 40-50% in children by the age of one year, considering the geographical outreach of the programme, the number of vaccines administered and the number of beneficiaries, it is one of the largest in the world. Vaccination has significantly reduced the frequency of illnesses and deaths in children due Diphtheria, Pertussis, Tetanus, Mumps, Measles, Rubella, and other such diseases. Life expectancy at birth has shown tremendous improvement even though, of the 26 million children born in the country every year, approximately 1.83 million children die before they turn 5. What is disturbing is that a majority of these deaths could have easily been prevented with improvement in sanitation facilities, timely medical care and vaccination.

There is limited awareness about vaccinations in India and therefore there are many misconceptions. There are many, including some activists, who believe in ‘nature cure’ and ‘nature therapy’ indicating no active technological intervention. They protest strongly against the government policies for compulsory childhood vaccination.  Most of these demands are based on inadequate knowledge and have somewhat individual-centric perspective of human rights as explained later.

Interactions with activists from diverse backgrounds bring out one significant point – an apprehension about technology – because technology related discourse uses specialized jargon, a large section of activists do not follow it. There are also, the all-pervasive feudal relationships apparent even in such movements, which make grassroot activists accept what is told to them by leaders as good, bad or ugly without developing an adequate information base or an understanding of technology.

The cumulative data from years of vaccination experience, in millions of children in the developed countries, has helped us evolve a better understanding of the advantages and disadvantages of the process. Some rare serious adverse effects continue to affect recipients adversely. Some others like autism, which remained controversial for a long time, were recently proven as not linked to vaccination.

For preventing the occurrence of diseases in order to improve the quality of life of the people, the development of new vaccines and clinical trials to test their efficacy are essential steps. However, these vaccine development (or for that matter, drug development) projects often become works-in-progress with no guarantee of complete success.

The Human Papilloma Virus (HPV) based vaccines to prevent cervical cancer is a good example to discuss. Cervical cancer affects uterine cervix, the lower part of the uterus, which causes an estimated  2,75,000 deaths a year. Out of this approximately 70 per cent occur in the developing world. A study published by Lancet early this year, stated that in India itself, majority of the cancer deaths in women were due to cervical cancer and breast cancer.

The HPV vaccine was undergoing development from mid-80s. Large scale trials in various phases have taken place in the developed and developing world including India to evaluate the efficacy of the HPV vaccine. From 2008 onwards, the vaccines are commercially available and millions of women (and men for infection caused by the same virus) in the developed world have completed the primary schedule of the vaccination.

After the success of two HPV vaccines in clinical trials, with their impending availability in the market, PATH initiated a process for a post-licensure observational study in some countries including India in 2006. However, following enormous criticism and campaign from health activists, government stopped the PATH study in 2010. One cannot deny the fact that there were adverse effects observed during the trials including a few deaths. There were also many irregularities in the process – concerns over ethical issues and arbitrariness, flouting rules and regulations – that this did happen in connivance with government agencies made it worse. Besides, testing it on poor tribal girls was a problem, obtaining informed consent from teachers rather than parents was another flaw, not using well-defined feedback methods which include checking and reporting adverse effects was also a major concern. There were other sticky issues like introducing vaccine where no surveillance system for cancer screening exists on the ground.

However, the development of HPV vaccine, which may help to bring down the incidence of cervical cancer does not appear unjustified in itself. The vaccine is proven to protect from HPV infections (repeat HPV infections contribute to cervical cancer). In a span of 5-7 years, no one can ensure that incidence of cancer has gone down; it will take 20-30 years of follow-up. But the logic suggests that the vaccine would have its positive impact.

Thus, should this vaccine technology itself be the primary target for criticism or should the way in which it was used in India be looked at? Do health activists and feminists understand and make this distinction when opposing clinical trials?

If this distinction is not made, it would mean that these critics are working against efforts to develop a new vaccine or a new drug, rather than criticizing the way in which technological innovations are tested.

Perceived injustice and concern for the underprivileged define the basis for the civil society activism in one form or the other. While the individual pain and suffering of the underprivileged or the victims of injustice cannot be denied, that in itself cannot and should not form the basis of activism. When a broader philosophical view is taken, it seems that considerations for the ‘greater good’ of the society with a focus on social justice and equality, define the primary basis of the activism. At times, this may entail undermining individual human rights, as mentioned above.

With the passage of time, technologies are pervading our lives more integrally and comprehensively, hence taking an informed stand on developments seemingly linked with the use of technologies is vital for the ‘greater good’ of the society.

Vineeta Bal is a member of Saheli and a scientist at the National Institute of Immunology, Delhi. The views expressed here are personal.

Original articles published on feministsindia.com can be reproduced but due acknowledgement to the website is obligatory

 

Abortion Rights: The Gender and Disability Dichotomy

abortion rights

­­­­­­­­­­­­The feminist position of supporting the ban on sex selective abortion but permitting abortion of a foetus with genetic abnormalities is a sore point for disability movement activists in India

By Vineeta Bal

In India, women got legal access to abortion from a population policy perspective rather than rights perspective. Until 1971, women were not allowed to get abortion done legally except in the cases of medical emergencies. The Medical Termination of Pregnancy (MTP) Act of 1971, in addition to ‘failure of contraception’ as a reason, also granted the right to abortion on the basis of detecting prenatal genetic abnormalities.

Amniocentesis – taking out a small amount of fluid from a pregnant mother’s uterus, commonly during 14-16 weeks of pregnancy – was the method of choice for detecting genetic abnormalities and it could detect only a few abnormalities.

In reality, in countries like India where male children are the preferred choice, it was widely misused for detecting sex of the developing foetus, resulting in high frequency of abortion of the female foetus. A recent paper published in the Lancet Journal has a detailed analysis on sex-selective abortions in India from 1995-2005 which predicted 3.1 to 6 million sex-selective abortions in the 2000s.

While the women’s movement has been silent on abortion of genetically abnormal foetus, there was an urgent demand to stop female sex selective abortion. Women’s rights activists had anticipated the skewing of gender ratios many years back and argued that there was a need to ban amniocentesis, resulting in the Pre Natal Diagnostic Techniques (PNDT) Act in 1994 for regulation and prevention of misuse of the diagnostic techniques. Subsequently, it was modified as Pre Conception and PNDT (PC-PNDT) Act in 2003.

By mid-90s, the need for an invasive technique to detect the female foetus had been bypassed. The new technology of sensitive ultrasonography machines which could ‘see’ the presence or absence of a penis during the scanning procedure had made female sex selective abortion easier.

Since women form half of the population and are necessary for the survival of the species, large-scale female sex selective abortion was considered a major risk from the ‘greater good’ perspective. However, legally banning female sex selective abortion but permitting abortion of a foetus with genetic abnormalities is a sore point for disability movement activists, who often question feminists about their logic for stopping abortion for one reason but not the other.

The issue of ‘greater good’ takes precedence here if the comparison between sex selective abortions versus genetic defect linked abortion has to be made. Genetic abnormalities or other structural and functional abnormalities present at birth which are detectable during pregnancy with certainty are still very few. There is also a spectrum of defects – some like anencephaly (near absence of brain) are very severe with a possibility of foetus dying in the uterus before delivery whereas some others like polydactyly (having more than five fingers per hand or foot) can be considered relatively minor. Abnormalities of this kind can be detected easily by ultrasonography but not necessarily by amniocentesis.

While the number of detectable abnormalities may increase in future, amongst the disabled people today the proportion contributed by disabilities detectable during early pregnancy is very small. When amniotic fluid samples were tested to rule out genetic abnormalities, in a referral laboratory in Spain, the frequency of detectable abnormalities was found to be 2.9% over a 10-year period. In other reports the frequency was even lesser than this. And one must keep in mind that not every pregnant woman is asked to undergo this test. Thus, the numbers of abortions which might be an outcome of this screening is nowhere comparable with female sex selective abortion. In a developing country, this percentage would be even lower because of limitation in the availability of these tests and the awareness about them!

The debate around the right to life of a foetus with abnormalities detected during early pregnancy does evoke a passionate response even amongst some feminists, who think of the foetus as an independent entity. At present, despite technological advances a 16-18 week old foetus, born as a premature baby, is almost always incapable of surviving outside the mother’s body even with all available outside assistance. Thus providing any ‘rights’ to this foetus which cannot survive while preventing the mother’s right to abortion does not appear justified.

However, in the present circumstances, what should be the best approach to address the dilemma? What steps could/should be taken? Should genetic screening be banned? Should all abortions be banned including female sex selective abortions? Should the right to life of a foetus with abnormalities detected during early pregnancy be invoked over the right of the mother to abort a foetus?

An ideal situation for feminists would be when the PC-PNDT act can be revoked because there is no longer gender-based discrimination in the society. Even on such a dream day a woman’s right to abort the foetus should not be taken away.

What about the right of the mother to abort a foetus with some abnormalities in this dream period?  Well, it should still remain intact and abortion should be permissible as mother’s primary right during that stage of pregnancy when a foetus born is incapable of sustaining itself despite adequate technology-based assistance. Today this period is about 20 weeks, and it may decrease with improvements in support systems in the future.

Beyond this critical period, other considerations may come into picture. For example, it is likely that stem cell therapy in the foreseeable future will help in providing cure for some of the genetic defects detected using pre-natal diagnosis. It also needs to be mentioned that some sections of the activists, because of misconceptions and lack of nuanced understanding, link stem cell therapy to eugenics (practices aimed at improving the genetic traits in a population) thereby opposing one potential therapeutic option for curing genetic defects. If such a cure exists and is available, at that point of time, counselling of mothers for continuation of pregnancy will become a real choice.

However, be it in the ‘dream’ period of the future or in the current reality, we need to demand and work towards providing social security for all disabled people, not just to those who are born with a defect.

In conclusion, while the woman’s right to choose is paramount and inalienable, civil society movements and activists should be able to modify their concerns and strategies by better understanding and assessing technological developments on their path to achieve social equality.

Vineeta Bal is a member of Saheli and a scientist at the National Institute of Immunology, Delhi. The views expressed here are personal.

Original articles published on feministsindia.com can be reproduced but due acknowledgement to the website is obligatory