At Home HIV Testing – Risks and Benefits

J0337242 Take a cotton swab.  Wash it around the inside of your mouth.  Put it in a container.  One line means no, two lines means yes.  But it doesn’t tell whether or not you are pregnant, it tells you if you have HIV.

I spent 14 years working in HIV/AIDS organizations advocacy and client services, first at the Gay Men’s Health Crisis in the 1980s and in the 1990s at AIDS Project Los Angeles – at the time the two largest such organizations in the country.  Also during the 1990s served on the Board of Directors and the Public Policy Committee of the AIDS Action Council in Washington, D.C.  A good deal of that time was spent studying and writing about issues connected with HIV testing. 

One central theme for me during those years was that an HIV test was something that a person should take on their own terms – when they were ready for it – and that the results were their’s to share, and no one else’s. 

The environment for testing in the 1980s was a grim one.  The test became available before there were many safeguards against discrimination and also before effective treatments for HIV itself, as opposed to treating the symptoms – the opportunistic infections that beset one with a compromised immune system.  At that time, our advocacy focused on having people test anonymously with counseling available, rather than test where your results were "confidential".  This was also due to the fact that there were public policy efforts being staged to punish HIV-positive people, particularly with ballot initiatives that would call for compulsory testing, screening before marriage and even issues related to quarantine.

Fortunately, in the interest of sound public health, all of that is pretty much history and the testing environment has evolved to the point where testing no longer has the stigma it once had, nor is HIV without effective treatment.  Pretty much.  But not always. 

But this new environment would seem, then, to imply that the time is right for home testing.  According to theBody.com one manufacturer is carrying that torch.  Recently the Blood Products Advisory Committee held a meeting whereby the company was advised to demonstrate that the test could be competently and accurately used and presumably, they are working on that.

I have always thought the concept of home HIV testing to be a good one and I don’t think there is much doubt the test can be used safely and accurately.  It certain supports one of my conditions for testing – that the test be taken on your own terms. 

However, the other part of the equation – that results be shared only with whom you choose – a point of caution remains.  An HIV at-home test kit, in the hands of the wrong person, can inflict damage on the life of another.  For example, would it be possible for a home test kit to be used by an adult on a minor – even an infant – to determine whether or not a child who is a prospect for adoption or foster care – is infected.  Could it be used by an institution – a school or institutional care facility, to discover the HIV status of a child.  Could it be used as a pre-condition to sex on a date? 

I’m not sure I know off-hand what risk management steps would be necessary to forestall such a possibility.  I do, however, think that these considerations of potential abuse should be considered along with the ability of users to employ the test accurately and safely.  Otherwise, there are some among the most vulnerable, who could truly wind up as "victims" of AIDS. 

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2 Responses to At Home HIV Testing – Risks and Benefits

  1. Lisa says:

    I think the idea of using it as a prerequisite to sex on a date is a great idea. I thought everyone agreed that it was best to talk about STDs before sex, but it’s so easy to lie about test results if the partner has no way to check. Is your thought that it would be better to let someone be infected with HIV under false pretenses rather than force their partner to either disclose their status or abstain?

  2. Mark says:

    My point is that I believe an HIV test should be undertaken with great care, not great abandon. It is not just a medical test, it is going to test every system you have going in your life. To undertake a test, just because someone else wants you to, I do not believe is a sound idea.

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