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At-Home HIV Test Raises Ethical Questions
Arthur Caplan   May 24, 2012   VITALS  

A test to determine if you are infected with HIV should be made available over-the-counter, a federal advisory panel to the Food and Drug Administration has recommended.

Having a home test kit available would seem to be a good idea for cutting down on new cases. About 1 in 5 people with HIV don’t know they are infected, according to the Centers for Disease Control, and could be passing the virus on to others.

And early treatment seems to help diminish the virulence of HIV so a home test kits sounds like a better idea.  And given that it was just recently announced by another FDA advisory panel that the drug Truvada ought to get the FDA’s blessing as a way to prevent HIV transmission, would seem to be a great idea.

But is an HIV home test kit really a great idea?

First, there is no mandatory counseling to go along with the test. You can get some counseling by phone if you want it but you do not have to do so. Shouldn’t counseling be mandatory? After all, if you test positive don’t you need to hear some information about getting medicine fast, telling sexual partners, changing any risky behavior you are engaged in and what to do if you are pregnant or have a serious disease?  When you test at home shouldn’t you have to contact someone who can tell you the facts you need to know?

Having a home test kit for HIV is a bit like relying on a bathroom scale in the battle against obesity. Both tests can tell you important information. That information may well save your life. But, unless someone discusses the significance of the test result with you telling you what can be done to battle the problem, there is a pretty good chance you will either say “Thank goodness I did not test positive” and keep doing whatever it is you are doing even if it is bad for you— or test positive and say “I have a problem and I am so ashamed or frightened I won’t do anything at all about it.”

There is another problem facing the home HIV test kit.  It is not 100 percent accurate. A negative result can occur by error, misusing the test or because the infection is too recent to register. A positive result needs reconfirmation by a blood test.

Another concern is that a home test kit can be used surreptitiously. The screening test relies on a simple swab of the gums. Someone could get your DNA while you are sleeping or under false pretense or even from a toothbrush.  You might get tested without your knowledge or consent.

It is still true that finding ways to let people know they are infected is better than doing nothing. Home testing will cut the rate of infection and that is good.

Still, to get the most out of home testing it is important that someone from outside the home be involved in discussing the results.

Image #1: HIV virus particles

The original publication of this article was at

Arthur L. Caplan, Ph.D., is the Drs. William F and Virginia Connolly Mitty Professor and head of the Division of Bioethics at New York University Langone Medical Center in New York City.


I welcome all home diagnostic tools. I do not think there are any difficulties that cannot be managed, nor risks that cannot be mitigated. Furthermore, I think restricting access to these tools actually makes people less personally responsible (specifically, and generally) in the long run.

1. mandatory counseling.

-Simply put a number to a optional counselling line on the box. People can also utilize personal resources here, such as friends and family. You don’t *need* to contact anyone. The information can be made available online. When they are ready and willing, they can voluntarily choose to go to the Dr. to get information.

2. “Thank goodness I test negative” (worry of continuing bad behaviour)

-The individual should be free to conduct their life as they choose to, rather than have guidance forced on them.  I value moving away from coercive political solutions in favour of personal responsibility. People do not get smarter by babying them, nor by blind rule following. Guidance can be sought, and, when free, people learn to seek guidance in the face of uncertainty or struggle. If they don’t want to improve their lives, forced guidance will not do much. Furthermore, the very act of taking an AIDs test indicates an understanding of what put them at risk of AIDs.

3. “It is not 100% accurate”

-It is 99% accurate, meaning a negative result is correct 99% of the time.  A doctor’s test is not 100% accurate either. As done in doctor laboratories, test multiple times. Laboratories have the additional worry of mixing up samples/results, something that will almost never happen at home. Many women buy two pregnancy tests in case they mess it up or the consumer product is damaged etc. 

4. “A negative result can occur by error, misusing the test or because the infection is too recent to register.”

-The test is designed to minimize the ability to make mistakes in testing. Make them stupidly simple like pregnancy tests, and pre-test % rate of botched testing and continue refining design and instructions until average errors in testing <1%. Not a hard problem. Uncertain you did it correctly? Test again. Laboratory technicians make mistakes too. They test multiple times.

“because the infection is too recent to register” - the window is 2 weeks for this particular test kit. Not very long. That information can be on the box. Women have easily understood that there is a window in doing home pregnancy tests and learned not to regard negative results of tests taken before a certain time has passed. 

5.“or test positive and say “I have a problem and I am so ashamed or frightened I won’t do anything at all about it.”

-If people have something that they think will kill them if they don’t seek medical attention, I see them very likely seeking medical attention. Only highly immoral people carry on as if they don’t have AIDS, and a doctor diagnosis can’t prevent maliciously behaviour of this sort either. People should be smart enough to realize that if they don’t know someone very well or trust them, that even them saying “I tested negative for AIDS” is not a reason to not wear a condom. Social learning here will happen quickly.

6. “Another concern is that a home test kit can be used surreptitiously.”

-The most interesting concern, but represents a small risk, and one that is irrelevant in the face of arguments regarding personal freedom and self-direction. Someone can also serve you a meal with poison in it. Trusting the people we spend time with in unprotected states always carries a certain degree of risk. 

I actually don’t foresee a lot of people using this test due to the nature of what they are testing. But then again, AIDs isn’t what it used to be. We are converging on effective treatments and maybe even a cure, making it less and less of a death sentence test result. Perhaps in 10-15 an AIDS infection home test kit “positive” would be as devastating as a UTI home test kit “positive”. But we need not wait until then to provide the option of home testing for people. For those who are up to it, they should have the option.

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