Introduction by Sandhya Srinivasan
Put a single drop of your blood on a specially treated strip of paper and in seconds you will know if you have malaria or just an ordinary fever. Wrap a bunch of wires around a person’s skull and turn the switch on to find out exactly what s/he is thinking. Create a baby in a test tube – give it the body of an Olympic athlete and the intelligence of a Nobel laureate; you can even pay a woman to carry that baby for you. Men: find out if your child is really your own – send DNA samples to a lab and see if they match. Get tested to find out if you have a particular cancer – or if you are likely to develop that cancer in your old age. Change the shape of your nose. Erase your wrinkles. Get a new face, a flat stomach, what the hell, just get a whole new body. Correct your vision with laser surgery. Replace your knees, hip, heart, kidneys, lungs, liver… Do you think you’re a woman trapped in the body of a man? Hormones, surgery and psychotherapy can change the way you look and how you feel about it as well. Hormones can also help you grow taller than all your friends, build muscle, and achieve your dream body. Mood stabilising drugs will calm you down when you’re anxious and lift your spirits when you’re depressed. Paralysed? Get injected with stem cells and start walking again. Genetic engineering, super vaccines, stem cell treatments will eradicate all diseases…
Stop to catch your breath, the list is endless.
Some of these technologies have been around for decades. Others are relatively new, and yet others may remain in the realm of possibility in our own lifetimes.
The newspapers would have us believe that medical science is galloping forward, providing access to technologies that were until recently unimaginable. That technology is opening a new, wonderful world, that people will live longer, healthier, happier lives in a society that has unlimited possibilities.
Indeed, medical technologies touch our lives at every stage and in so many ways that it is difficult to know where to start the list. Contraceptives are taken to prevent pregnancy; in vitro fertilisation is used to get pregnant; pregnant women undergo prenatal tests; infants get vaccinated... We cannot possibly be conscious of the degree and scope of their involvement in our lives. From the simple microscope to magnetic resonance imaging, from appendectomies to brain surgery, the fact is that technologies are transforming our lives, our relationships, our worlds.
Some of these developments have paved the way for a new wave of medical procedures. Immunosuppressant drugs and tissue typing techniques made organ transplants possible. Today, a single cadaver can provide two kidneys, two lungs, one heart and one liver, two corneas, skin and bone, all for transplant. And a couple of years ago, the first face transplant in the world was conducted on a woman whose face had been torn off by a dog; the transplant enabled her to come out in public after years. The discovery of antibiotics eventually led to scores of new bacteria-fighting drugs. Fertilisation of an ovum outside the body and implantation of the embryo in the uterus is now commonplace.
However, technological developments cannot be accepted without reflection and debate.
Medical technologies: Some questions
The writers in this issue of Agenda discuss different aspects of medical technologies already out there in the ‘market’. They ask questions such as: What are the factors shaping the development and diffusion of technologies? Are the current trends in healthcare technologies relevant to our needs? Do they help us lead more fulfilling lives or do they exacerbate existing inequities? Do they solve existing social problems or create new ones? What must we consider when making decisions related to these medical technologies, as individuals and as a society?
Knowledge, attitudes and choices
Information is not always power. Anoop Kumar Thekkuveettil, Mala Ramanathan and Harikrishnan S discuss the use, misuse and consequences of new pre-natal diagnostic technologies. Already, women may be encouraged to undergo tests to identify genetic conditions, on the assumption that they are morally obliged to choose a ‘perfect baby’. Disability is to be ‘overcome’ by elimination of the disabled rather than by forcing changes in society to include the needs of those with disabilities. Soon, women who give birth to babies with disabilities will be viewed as irresponsible mothers. The growing use of such technologies is a matter of concern, note the authors, calling for greater discussion and regulation of pre-natal technologies.
Sameera Khan gives a first-person account of how a pregnant woman is advised to undergo these tests: her vulnerability may be ignored, she may receive scant information on the risks and benefits of these tests, and there is an underlying value judgement on disability. She concludes: “On the one hand, it must be acknowledged that… (pre-natal) tests involve some very private and complicated decisions by people. On the other hand, it is also important to note that many of these private decisions also carry profound social implications.” In an interview carried alongside Khan’s article, gynaecologist Duru Shah discusses the role of clinical judgement in providing medical care; in addition to this judgement, the medical professional must also respect the patient’s concerns.
Sanjay A Pai’s history of imaging technology, starting with the x-ray, through CT scans, MRIs and now teleradiology, also highlights the consequences of promoting tests without ensuring that they are useful, and without informing people of their limitations. Women are advised to undergo regular mammograms for early detection of breast cancer. They are unlikely to be told that the chances of getting a ‘false positive’ mammogram result are high – which can not only cause anxiety but also result in unnecessary further tests before they are found not to have breast cancer. Certain imaging technologies also have risks. Finally, Pai notes that refinements in imaging technology have come at a hefty price, but without necessarily improving healthcare for people.
Social perceptions of the good life
Does technology always lead to an improved quality of life? Parents of hearing-impaired children may feel that cochlear implants will bring their children ‘back into the world of sound’. But others believe that it is an attack on a cultural and linguistic minority. When a doctor offers a cochlear implant, s/he presupposes that deafness is a disability. Shabnam Minwalla speaks to parents, medical professionals, and advocates of the deaf community, to present the ethical controversy surrounding the implant.
Controlling women’s bodies
One of the earliest battles in healthcare ethics concerned research in and promotion of contraceptives in the name of ‘reproductive health’. Sarojini N B traces key events in the history of injectable contraceptives and contraceptive implants to illustrate the manner in which research in medical technologies has been shaped by the needs of the state to control women’s reproductive lives.
The science behind contraception can also be used for reproduction. Assisted reproductive technologies are perhaps the most visible and recognised of medical technologies. The ART industry has exploited the social pressures on Indian women to have children. It claims to offer women new choices when in fact it increases the pressure on women to use these technologies, despite the high costs, poor success rates and risks to their health. It has now expanded beyond the local market to set up surrogacy factories targeted at the ‘surrogacy tourist’, exploiting poor women’s desperation to get them to risk their health for money.
Chayanika Shah takes all these facts as given and moves on; while calling for regulation of these technologies to reduce the risk of harm to women, she also proposes that ARTs can be liberating -- they can be used to change social norms on what a family should be.
ARTs are the source of stem cells and stem cell research has resulted in treatments for certain conditions, but more often it has used false advertising to sell miracle cures to desperate patients, writes Sandhya Srinivasan. Amit Sengupta describes the controversies surrounding stem cell research in the West where it has been criticised not only by conservatives opposing it on grounds of ‘immorality’ but also by those who point out that it has created an international trade in ova.
Cosmetic technologies present other concerns. Manjima Bhattacharjya interviews women in the glamour industry in India on their views on the ‘ideal body’, obtained through diet, exercise, beauty regimens, and cosmetics. She describes the model’s regimen as “driven by a desire to transform, reform, or ‘correct’ one’s body according to both the imagined and real needs of their industry”. Medical technology provides the means for this transformation.
Compromising medical ethics
Doctors are supposed to care for patients, and the patient’s interests should be foremost in their minds. But they have conducted medical procedures that are of no medical value -- by collaborating in interrogation using medical techniques, and participating in executions. Amar Jesani documents the history of medical interrogation. ‘Truth serums’, ‘lie-detection’ tests and ‘brain mapping’ involve medical professionals in their professional capacity – but as agents of the state rather than advocates for a patient. Vijay Hiremath discusses doctors’ involvement in the death penalty, to certify death. He also comments on a recommendation by the Law Commission that hanging be replaced by lethal injection: this would further involve medical professionals in the death penalty by making them actually perform the execution. Jesani argues forcefully that by participating in torture, doctors are “eroding the very core of the medical profession”.
Pills and profits
In her 2004 book The Truth About the Pharmaceutical Industry: How They Deceive Us and What to Do About It, Marcia Angell meticulously documents the US industry’s uncontrolled growth in its profit-seeking mission, and the support it has received from the government – funds to develop drugs that could then be patented by private companies, drug approval procedures that permit the patenting of ‘me too’ drugs, loopholes to extend a drug’s exclusive marketing rights, and so on. Angell also points out that -- despite patent protection -- few innovative drugs have been developed in the last decade to replace drugs that are going off patent. For example, just seven of the 78 drugs approved by the US Food and Drugs Administration in 2002 were classified as improvements over older drugs.
But the pharmaceutical industry must generate profit. S Srinivasan illustrates how desperate drug companies faced with a drought of innovation have turned to finding new uses for drugs of little value. He discusses the phenomena of disease-mongering and ghostwriting to create markets for new medical conditions such as ‘erectile dysfunction’ and ‘social phobia’.
A number of deadly diseases are preventable by vaccines and it is generally accepted that they are important public health technologies. The problem is that vaccines are given to healthy children to protect them from a disease that they do not have. And while not all vaccines are of equal value, all of them carry some risks, however small. Prabir Chatterjee discusses controversies about vaccines -- “which ones to use, how they should be promoted, how much the public should know, and their role in public health programmes”.
The challenges of high technology
Intensive care technologies pose unique ethical challenges. The patient is often not in a position to participate in treatment decisions. ICU care is extraordinarily expensive and emotionally distressing for the family. In India, ICU care can bankrupt a middle class family. Two paediatric intensivists, Akash Bang from a community hospital and Arvind Kasaragod from a corporate set-up, describe the dilemmas of paediatric intensive care. Can decisions be made on medical need alone, and is it possible to ignore the financial burden on families?
Finally, which technologies do we choose? Biswaroop Chatterjee votes for the microscope rather than rapid tests which are currently being promoted in government programmes. The microscope is an inexpensive tool that can be used by a trained technician to provide an accurate diagnosis at a cost affordable to the community. It also makes most sense in a comprehensive healthcare system rather than a vertical, disease-focused programme. Kavery Nambisan makes a plea for the real innovation -- appropriate and affordable technology – and reports on the achievements of rural surgery in India.
The economic drivers of scientific research
These articles drive home the message that technologies are not simply natural consequences of a scientific endeavour; nor are they necessarily products of the search for ways to improve people’s lives. Serendipity has little to do with the application of science. The pursuit of scientific knowledge is always tempered -- by the money needed to do research, which in turn is determined by the interests of funders, who must answer to their shareholders, official or otherwise. Likewise, drugs for many conditions remain unavailable because the companies that control their patents see no market for them. The development and diffusion of technologies depend on their potential to exploit existing demands and create new ones, and to serve powerful interests.
Research agendas are not generally reflective of people’s needs. For example, of the US$73 billion spent annually on health research across the world, less than 10% is directed at diseases that affect 90% of the world’s population, according to the Global Forum for Health Research. This is so because the 10% constitute the real market for the products of this research.
The pharmaceutical industry is a good example of the fact that the subject of research is determined largely by those who fund it, as they want returns on their investments. According to a study by the Drugs for Neglected Diseases Working Group, convened by the international health organisation Medecins Sans Frontieres, of 1,393 new drugs brought to market between 1975 and 1999, just 16 were for tropical diseases. We don’t have new drugs on hand for tuberculosis, which kills 370,000 Indians every year -- one of the top 10 causes of death and the leading cause of death among adults in India. As for access to drugs, 87,000 of the 1.9 million new cases of TB in India every year are of multi-drug-resistant TB, for which treatment can be Rs 100,000 to Rs 350,000 per person -- and more. This, in a country where the majority of people pay for healthcare out of their own pockets, without insurance, often even when they fall ill with diseases covered by government programmes.
Decisions regarding technologies are determined by the big actors including industry and governments, and the policies that support their interests. For example, which drugs should be available in the tuberculosis control programme and how should they be made available? These decisions are based not just on knowledge of a drug’s safety and efficacy and the bacteria’s resistance, but also on our understanding of how healthcare should be provided – as discrete programmes or as a comprehensive system with services for preventing illness as well as treating it. Or when a disease control programme is funded by a foreign loan – and is then required to buy a test kit manufactured by a particular company. Or contraceptive research that focuses on injectables and implants – methods that are controlled by providers rather than users.
Cost and access
Access to a technology is also shaped by socio-economic factors. The best treatment may not be available to those who need it most. For example, while tens of thousands of children in India suffer damaged heart valves due to untreated infections, a few hundred receive valve replacement surgery. A fraction of the 32 million diabetics in India can afford the drugs they need. One study found that Indians with diabetes in rural areas can spend up to 25% of their annual income on treatment -- for the urban poor this rose to 34%. Poor women face additional barriers to healthcare.
This is the irony in a country where the most sophisticated medical care is available even as the right to basic care is not guaranteed. A government hospital in Mumbai is in the process of setting up a liver transplant surgery programme. On the other hand, user fees effectively deny the poor far simpler surgical procedures. But certain contraceptives are more easily available than medical treatment in government centres, as population control is considered a priority.
Further, when government policy does not assure everyone a standard of medical treatment, you get a two-tiered system of care: one for those with the money and another for those without. Chennai-based trauma surgeon George Thomas has commented that though the development of joint replacement has had an immense impact on the quality of life of people with damaged knees, in India, implants of poor quality continue to be widely used. The cheaper Indian implant for knee replacement can cost Rs 50,000 -- and even this will not meet quality standards. The standard better quality ones (all imported from the US or Europe) cost Rs 65,000, and the more sophisticated ones can cost up to Rs 350,000, which restricts their use to the few patients who can afford to pay such prices. Thomas, who is also editor of the Indian Journal of Medical Ethics, notes that doctors are regularly forced to make such decisions – to give substandard treatment because it is all that the patient can afford. This happens because healthcare is based on profit rather than on what the patient needs.
The question of standards brings to mind the scandal some years ago about drug eluting cardiac stents. These are used for angioplasty and bypass surgery to open up blocked cardiac arteries and keep them open. It turned out that more than half of the 60,000 angioplasties done in India annually used stents that were not approved in the country of their manufacture – and India had no regulatory system to set standards and ensure that they were followed. So the medical devices industry chooses to manufacture what it finds profitable, and follows standards only when it is forced to do so.
The influence of privatisation of healthcare
Gastrointestinal surgeon Sanjay Nagral, one of the founding members of the Forum for Medical Ethics Society, has argued that the pressures of a privatised healthcare system drive the manner in which specific technologies are developed and disseminated. Writing in the Indian Journal of Gastroenterology in 2006, he comments on the larger context in which liver transplant surgery has been established in India. For those with extreme liver disease, the only option is a transplant, from a cadaver or from a live donor.
Extracting a part of the liver for ‘living donor transplant’ is major surgery which has, on occasion, led to the donor’s death. Living donor transplant programmes in other parts of the world have been developed systematically, with trained, experienced personnel, the infrastructure and procedures to ensure that donors are properly informed, and not coerced. Such programmes publish their rates of success and complications. They have also developed alongside cadaver-based transplant programmes.
Cadaver programmes require a concerted effort to promote organ donation: a system of identifying brain-dead donors, counsellors, mechanisms to share organs across institutions, and so on.
Living donor transplant programmes in developing countries such as India have grown at the expense of cadaver-based programmes. They have been established without ensuring standards and public reporting. We don’t know how many people have suffered complications or died in India following donation of a part of their liver – hospitals are not required to report these figures. But, according to Nagral, one in five donors suffers complications and many more liver donors have died than kidney donors. He points out that living donor programmes in India are mostly in the private sector “where the market is the prime determinant of how specialty medicine develops”, and they must deliver results to get more patients. There is also a possibility that liver transplant tourism -- based on a liver trade akin to the existing kidney trade -- may be the next medical tourism promoted in India.
Food is the best technology
We must remember that the technologies with the greatest impact have been those that we might take for granted: adequate food and clean water. Indeed, the greatest improvements in life expectancy were not because of antibiotics and vaccines.
Public health researcher Mohan Rao at the Centre for Social Medicine and Community Health, Jawaharlal Nehru University in Delhi, refers to the English doctor Thomas McKeown who charted the decline in the death rate in England and Wales; McKeown found that it started in the 18th century before effective medical technology became available. He concluded that this drop in deaths from infectious diseases was mostly from improved nutrition because of greater availability of food. Similarly, TB was killing fewer people much before the bacteria was even identified in the 1860s, and definitely before anti-TB drugs were developed in the 1940s. McKeown also held that improved resistance because of improved nutrition was largely responsible for deaths even from waterborne diseases like cholera.
A matter of choice
Physicians and surgeons advise their patients on which tests they must have and, often, at which laboratory. They can guide them on how to avoid a heart attack: by changing their lifestyles, or popping a pill, or getting their stomachs stapled to prevent them from eating too much. Fertility specialists can choose to prescribe IVF for every woman who walks into their clinics, or they can start with other procedures and include advice on adoption or just not having children. Government policymakers take decisions on which vaccines to introduce into the national immunisation programme. Hospital administrators have a say in which drugs to buy, and whether to stock expensive brands or generic formulations. Drug company heads decide whether to sell antiretroviral treatments at lakhs of rupees a year or at a few thousand. Researchers are supposed to ensure that trial participants are properly informed and their consent is taken before they are given an experimental drug. Medical associations should reprimand their members for participating in medical interrogation -- but may decide to turn a blind eye to the practice. Journalists can choose to write articles based on press releases -- or they can do their reading and find out if the tall claims about stem cell treatments have any basis. Regulatory authorities can ensure that sonograms are not used for sex selection.
Finally, people and patients too are involved in the development, promotion and use of medical technologies, and they do this because they benefit from their actions whether as individuals or as a group. They have an ethical responsibility to oppose their misuse.
(Sandhya Srinivasan is a freelance journalist specialising in public health and development issues. She has a Master's in public health and is Executive Editor of the Indian Journal of Medical Ethics. She was a Panos Reproductive Health Media Fellow in 1998 and an Ashoka Fellow. She is Consulting Editor, Public Health, for www.infochangeindia.org)
Infochange News & Features, December 2010