By Nathan Risinger

 

How important is informed consent? Recently, a judge in Namibia ruled in favor of three women who were seeking compensation after being sterilized against their will.  HIV positive and pregnant (according to UNAIDs almost 20% of pregnant mothers in Namibia are infected with the virus), these women were coerced by their doctors into consenting to the procedure. Experts claim that this case is just the “tip of the iceberg”. There may be hundreds, if not thousands, of women throughout Africa that have been pushed into undergoing this procedure, which they would not have otherwise wanted.

 

Impositions upon the agency of individuals are generally suspect, but they become even more morally perilous when that imposition is being justified as necessary medical care.

 

The idea of forced, or involuntary, medical procedures should send chills down our spines’. It can be a violation of very personal and sensitive terrain.  Often it can occur in a context when a patient is sick, vulnerable, and unable to make rational decisions.

 

In much of the world, treating a patient against his or her will is viewed as criminal assault. Medical treatment should be as elective as possible. The US Supreme Court, for example, ruled (O’Connor vs. Donaldson, 1975) that involuntary hospitalization violates a citizen’s civil rights, except in cases where the patient is believed to be a danger to themselves, or others.

 

Informed consent is one of the primary tools available for protecting patients. It is essential for a variety of reasons. Among other things, it can serve as a firewall between the patient and the medical professional; a stop-valve against medical hubris or paternalism.  Doctors – like all humans – have the potential to become infatuated with their own abilities and expertise, sometimes to the detriment of the people they are treating – transorbital lobotomies performed in the mid twentieth century come to mind.

 

Informed consent also provides a way to respect an individual’s agency. In most cases involving medicine or public health informed consent is a vital part of maintaining patient autonomy.  It allows an individual agent to make unfettered decisions regarding his, or her, own health.   This practice is vital to maintain for obvious ethical reasons.

 

We have a moral imperative to stand and be counted as individuals, each of us is unique in terms of our moral values and ethical systems, and it is this singularity that makes individual and informed consent so important.  What may be right for you, or even right for the majority, may not be right for me.  If we do not exercise our inalienable (but not unlimited) right to autonomy then it ceases to be a right at all.

 

Debates about rights and autonomy make fine topics for an undergraduate philosophy seminar, but becomes more challenging to apply in the real world, particularly in medicine. After all, ethics is a field that exists predominantly in the abstract; while in medicine empirical evidence is used to grapple with far less abstract health challenges. They do not neatly overlap.

 

 

Regarding the forced sterilization of women to prevent the transmission of HIV/AIDS, it is not completely unreasonable to ask whether preventing transmission is just as important as the benefits brought to patients through informed consent. HIV/AIDS disease has taken a terrible toll on the African continent for the past several decades. According to the WHO over 34 million people currently live with the virus worldwide, and 1.8 million of those infected died in 2010 alone. Sub-Saharan Africa accounts for a disproportionate percentage of both the reported cases (22.9 million) and deaths (1.2 million in 2010).  So, which is the greater good: protecting the population as a whole from the spread of a terrible, deadly virus, or affording the correct degree of agency to the autonomous individual?

 

There are plenty of examples (albeit not nearly as extreme as forced sterilization) of informed consent being trumped in medicine.  If a patient is contaminated with a contagious disease she or he may be quarantined, regardless of personal wishes.  In the US there are mandatory vaccination laws that are in place to combat the potential outbreak of a deadly pandemic.  In China they have attempted (with limited success and amid much controversy) to control their population through the implementation of a ‘one-child policy’.   These are cases in which the government has expressed its macro-obligation to its people at the expense of the rights of some individuals.  Given that this is sometimes acceptable, the question then becomes, where is the line? Which cases merit the suspension of informed consent? And to what degree can consent be suspended?

 

A strict utilitarian might argue that not only can we have forced sterilization as an acceptable tool to fight against the spread of HIV, but that we must.  There are certainly flaws inherent in such a simplistic view.  It treats the issue as clear-cut, black and white, when it is anything but.  (If anything the HIV/AIDs epidemic is colored with nuanced shades of grey.)  Furthermore, by only looking at the aggregate statistics, and not the plight of each individual on a case-by-case basis, it may lead to undesirable outcomes for particular individuals at the expense of choices that benefit a majority of the population. However, perhaps in cases where the numbers are as staggering as those involved with HIV/AIDs in Sub-Saharan Africa the macro issues must take precedence in an effort to provide significant and essential benefits to population as a whole.

 

Discussing an issue as complex as HIV/AIDs in broad terms and abstract language is, perhaps, an unfortunate necessity; even though a macro approach may lead to certain cases of individual autonomy being infringed upon. If one were to attempt to understand the epidemic in its particulars, on a case-by-case basis, it would not only be emotionally and mentally draining, but it would also distort the lens of perception making it harder to fully appreciate macro-level considerations.

 

In the particular case we are focusing on (sterilization to prevent the transmission of HIV) it is essential to point out that just because a mother is infected with the virus does not mean that her child will necessarily be infected.  Perinatal transmission rates range from 15%-45%.  And this number drops significantly (to below 5%) with the implementation of effective interventions.  In other words there are relatively effective and less draconian solutions than forced sterilization which must be explored.  Unfortunately these measures are not feasible for everyone, particularly in resource-limited settings.  Treatments can involve complex, and expensive, regimens of anti-viral drugs for the mother.  These regimens require strict adherence and are drastically reduced in terms of effectiveness if not followed to the letter.

 

Our initial reactions to this case might be to recoil at the notion of forced sterilizations and a heavy-handed suspension of informed consent, particularly for women in resource-limited countries. However, we should also take care to ensure that rare and limited exceptions to the general use of informed consent are, at least, carefully considered in pursuit of certain appropriate population-level goals, such as battling a pandemic that has destroyed generations of mothers, fathers, daughters, and sons.  Clearly, in this case, finding ways to make less invasive and harmful solutions more feasible would be preferable to forced sterilizations, but the point is that informed consent, while very important, need not necessarily trump all other concerns.

 


Nathan Risinger, B.A., is a research assistant at the Johns Hopkins Berman Institute of Bioethics.  He is interested in the concept of free will, especially in relation to the possibility of objective moral truths.

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