Wednesday, October 01, 2008

The ART bill to regulate IVF in India - doctors, patients and bureaucrats

The Draft of the proposed ART bill to regulate IVF clinics in India has now been published online; and the public is being invited to offer feedback.

While regulation maybe needed to improve the quality of IVF services, and one of the good things about the bill is that it legalises surrogacy, I have major concerns about certain clauses in the bill. For example, it does not allow altruistic egg donation between sisters - and I cannot understand why this is being banned. Nowhere else in the world is egg donation between sisters disallowed - and in fact, sisters usually make very good egg donors, for obvious reasons.

The purported reason for this ban is to ensure anonymity - but I cannot understand what benefit this provides. While altruistic surrogacy is allowed, altruistic egg donation ( which is encouraged in most countries) is not ! If a woman can donate one of her kidneys to her sister, why can't she donate her eggs ? What amazes me is that Indian women are keeping quiet about this infringement on their autonomy !

The ban is based on talking to sociologists; and a few bad experiences, where family members were "coerced" into donating their eggs. However, I think it's unfair to generalise based on a few bad cases and to ban this option outright for everyone !

I think it all boils down to the worldview of lawyers versus doctors. Lawyers and bureaucrats look at the world through a lens of problems because that's all they deal with . They try to think up means to prevent these problems. Their major tools are laws and rules to prevent and prohibit . While this can be a good approach, when carried to extremes, it results in bad outcomes for many helpless individuals. Doctors , on the other hand, usually take an empowering and enabling approach, to try to help patients who come to them in their hour of need. They will try to look for means to help people, rather than to limit their rights.

Thus, if the Bill had been drafted by a doctor, it would have laid out under what conditions egg donation between sisters is allowed , so that everyone's interests are protected. The Bill has taken an enabling approach towards surrogacy, by clearly defining under what conditions it is allowed, thus protecting everyone's interests - the infertile couples, the doctor and the surrogate. Why can't they take the same approach to egg donation as well ?

By allowing lawyers to set limits on what doctors can do, patients are going to pay a price in the long run, because their doctor's hands are tied.

The reason doctors and bureaucrats think about things so differently is because of a top-down versus bottom up approach.

Bureaucrats and regulators take a top-down approach. They pride themselves on their ability to look at the "big picture". They trouble shoot, based on problems which have already been encountered; or potential problems which may arise - and think of ways and means to prevent such problems. If, in the process, they prevent some individuals from doing certain things, they feel that this is the price which needs to be paid - and justify it by saying that you may need to crack a few eggs to make an omelette; and that individuals should be willing to sacrifice for the sake of the "greater good". They try to fit square pegs into round holes - and if a few pegs get hurt in the process, then so be it. Since this is private pain, individual patients suffer in silence, and the harm caused to them is never made obvious, so everyone feels that this is a good law which provides an effective solution.

Doctors, on the other hand, take a bottom up approach. They deal with individual patients, one at a time, and try to help them resolve their problems. They look for solutions, so their patients can get what they desire.

Such a difference in opinions is likely to lead to clashes - which doctors invariably lose, because they do not have the political skills ( or time) to follow the process required to provide useful inputs.

Unfortunately, the biggest losers in this process are patients, who find that their rights are curtailed for no fault of theirs.

1 comment:

  1. Hello Doctor,
    Could you elaborate on what the bill's all about? What other limitations it imposes compared to now if it it becomes law? And how it's positives?


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