An Indian summer?

Maybe it is selective perception, or coincidence, but over the summer I kept seeing bioethics and research ethics items about India. Three medical ethics items that were hard to overlook: in two, surgeries were performed not by qualified health professionals, but by their family members. In one case, a 15-year old performed a Caesarean section under the watchful eye of his parents, both physicians. After the case hit the media, the boy's father, unrepentant, said he wanted his son to be in the Guinness Book of Records as the youngest ever surgeon, and that he had been training his son since the boy was 12. It is not clear what the patient thought about this arrangement or (aren't you curious?) how the operation went. In the other case, a doctor in the northern Indian city of Lucknow allowed his daughter-in-law to surgically remove a woman's 5 month old dead fetus. She botched it, and the patient eventually had to have her uterus removed. In a third story, a man had to deliver his own child when doctors in Meerut found out his pregnant wife was HIV-positive. The hospital staff refused to get anywhere near the woman, but were willing to give advice from the other side of the room. These incidents have led to much soul-searching and many questions in regard to the protections Indian patients have against malpractice, negligence and discrimination. The Indian trade in transplant organs is well-known, though publicity does not stop such trade from taking place. Perhaps less known is the stigmatization and exclusion of HIV patients by some health care workers and institutions; last month saw a man having to deliver his own child, when hospital staff refused to come into contact with his HIV-positive pregnant wife.

Then there is the biomedical research scene in India. An article in the May/June issue of the New Left Review by Kaushik Sunder Rajan, entitled Experimental Values: Indian Clinical Trials and Surplus Health, describes the scramble of international and local commercial research organizations (CROs) to conduct clinical trials in India, and basically argues (via some neo-Marxist conceptual gymnastics) that Indian participants get the raw end of the deal: the trials increase the benefits and lower the risks of yet-more medications targetted at affluent 'consumers of health', the CROs make a nice profit, the pharma industry makes an even nicer profit, while Indian research participants will be lucky if they can gain reliable access to old medicines, not to mention the newly tested ones. The introduction of ethics codes and consent forms, according Sunder Rajan, will leave these power imbalances untouched. The article came out in the summer, but it is clearly not for beach reading. It is not the first time such concerns have been raised. Meanwhile, there is the familiar dialectic of research scandals and calls for more ethics education. A study in which the genitals of children were examined without assent of the children or parental permission -- the data apparently to be used for purely commercial interests -- came to light during July. The rapidly increased volume of research in India seems to have provoked the Indian Council of Medical Research (ICMR) to issues new ethical guidelines last year.

It is hard to underestimate the challenges involved in strengthening the ethical conduct of biomedical research and medical practice in a country that is geographically large with a high population density, is marked by tremendous ethnic and religious diversity, has vast gaps between the rich and the poor, struggles with substantial gender inequality, and which has become a magnet for global pharmaceutical companies.