At-home HIV test raises ethical questions, bioethicist says

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? On the whole yes, but, there are some big ethical holes facing home testing.

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.

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  • Discuss this post

    Seriously Art Caplan, Ph.D.? Health is a personal RESPONSIBILITY. Other than some who have ZERO ethics most people would be on the phone with a medical provider to get the test confirmed at the first hint of a positive result. Most likely praying, even if atheist, that it was a false positive... which is less than 1% if I recall from earlier reading.

    Much like EPT, I think most people will use this, and other, testing as a first line defense before paying for the more expensive and reliable lab testing. When are the at home tests coming for the other STD? Is there not a correlation between STD and HIV infection rates?

    • 4 votes
    Reply#1 - Tue May 15, 2012 7:38 PM EDT

    Great points. I too think this should be available ... and at any age as well. I don't think it should be restricted to "adults".

    • 3 votes
    #1.1 - Tue May 15, 2012 9:23 PM EDT

    In my state I believe there are a number of free anonymous testing sites available, of course depending on where you are located it may be an hour's drive away. I wouldn't think they screen for minor's being an anonymous lab. Also your local county health department may do free anoymous testing.

      #1.2 - Tue May 15, 2012 9:42 PM EDT
      Reply

      Quit being so whiny, author-man. For God's sake, to refute your entire argument, all that has to be done is include a little card with the test that says "If you test positive, call this number". A home test is a good thing. Duh.

      • 2 votes
      Reply#2 - Tue May 15, 2012 7:55 PM EDT

      Another ridiculously overblown headline, rife with inaccuracy.

      • 1 vote
      Reply#3 - Tue May 15, 2012 8:32 PM EDT

      I think it should be mandatory that everyone get tested for stds, and if they have any the info should be available to the public. If they refuse to get tested then they should get slammed with like a 10k medical fine. No one has the right to knowingly have an std and then continue to be sexually active. I also wish scientists would hurry up and invent nano bots that can physically assault and destroy virus particles inside us. But with my luck theyll invent it then ill get eaten to death by a nano bot resistant flesh eating bacteria.

        Reply#4 - Tue May 15, 2012 11:34 PM EDT

        I'm a little surprised that Caplan focused on the lack of mandatory and immediate counseling, and shocked he compared the test to a scale to diagnose obesity. There is a much bigger ethical concern with home testing for HIV and that's due to the fact it is a communicable disease (and diagnosis is reported to the CDC) coupled with the fact that, unlike obesity, you can't tell someone is HIV positive by looking at them. While most people will see a physician asap to get the diagnosis confirmed and treatment, many will; some may well be angry and blame others/the world and decide to take it out on the world by knowingly putting others at risk. It's understandable that people would not want anyone else to know they are HIV positive and why it would be preferable to a patient to have complete privacy with regard to a diagnosis but to disregard the potential ethical problems associated with a disconnect in the tracking of what is a virus that is easily transmissible through direct contact with body fluids is irresponsible

          Reply#5 - Wed May 16, 2012 6:45 AM EDT

          Make it a registered over the counter item just like many states have done with products that have Ephedrine in them. Then you can have some form of follow-up for them.

          Just recently there was a news story about Target determining from shopping habits if their customers that had bought EPT had a positive test by their change in shopping habits. So you can also use data mining after the fact to determine what their test results were. I'm sure there will be other changes in behavior if they have a positive test that can be noted - like buying a 2nd test kit.

            Reply#6 - Wed May 16, 2012 7:19 AM EDT

            Isn't the fact that TARGET is tracking Medical sales/purchases frightening and akin to society in 1984?

            Isn't this fact - TARGET medical/pharmicological sales-tracking and the resulting speculating and coordination and publication - UNETHICAL? ILLEGAL? AN INVASION OF PRIVACY?

            • 2 votes
            #6.1 - Wed May 16, 2012 10:06 AM EDT

            Make it a registered over the counter item just like many states have done with products that have Ephedrine in them. Then you can have some form of follow-up for them.

            PREGNANCY TESTS? CONDOMS? BIRTH CONTROL? CIALIS/VIAGRA/LEVITRA?

            • 1 vote
            #6.2 - Wed May 16, 2012 10:19 AM EDT

            I assume that TARGET is tracking these sales as well?

            Pay-by-cash seems to be the solution to avoid being TRACKED BY TARGET.

            • 1 vote
            #6.3 - Wed May 16, 2012 10:27 AM EDT

            No Robert, I do not find having my sales tracked by Target frightening or a sign of Hollywood-style dystopia. I'm buying their products, and it seems completely paranoid to worry that they'll remember what products I bought and use that information in some way.

            I do hope that your fear of being TRACKED BY TARGET stems from a lack of real problems in your life, otherwise I shudder to think of the difficulty you must have in trying to maintain your sanity while jealously defending your privacy.

              #6.4 - Mon Jul 16, 2012 4:52 PM EDT
              Reply

              This probably is one of the worst discussions of medical "ethics" I have read. First, it only looks at the issue from the negative side of people not taking action. If 1 in 5 don't know they are infected and continue risky behavior reducing that by any amount is a success. Suppose only half the people with home testing get counseling or care, you have reduced the number of reckless people to 1 in 10. Sounds good to me. Moreover Caplan offers no statistic on the number of people who get diagnosed and counseled and then continue to engage in reckless behavior or don't seek medical care. If of the 4 out of 5 people who do know they are HIV positive but only 75% follow up appropriately thats a bigger number than the 1 out of 5 that don't know. ANY IMPROVEMENT IN THE DIAGNOSIS AND TREATMENT OF A POTENTIALLY LETHAL AND TRANSMISSABLE DISEASE IS OF BENEFIT!! Don't let pererfect stand in the way of good.

              • 3 votes
              Reply#7 - Wed May 16, 2012 7:39 AM EDT

              I almost never leave any comments but in this case I feel I must. Ethics is always a debatable issue. Each one of us come to the table with a myriad of differing opinions and moral standpoints. I was a bit surprised when I read this article that the focus was on whether or not it was ethical to have at-home HIV tests but not mandate counseling. The question could be asked in reverse. Is it ethical to mandate counseling? It seems quite invasive to me that it would be mandatory to receive counseling after receiving a positive test. While the author infers that counseling will support the individual in informing former partners and taking other necessary steps is this the case?

              It seems that the "ethical" concerns that the author listed are far less concerns (for me) then giving people the accessibility to at home HIV testing. There will always be people who fall between the cracks. There will always be people who fail to heed counseling and endanger others. I think that the benefit of having an at home HIV test far out weighs these "risks" that were talked about.

              • 1 vote
              Reply#8 - Wed May 16, 2012 9:09 AM EDT

              I wonder how many people commenting here have gotten tested? Surely, if you've been through it you would know how nerve-wracking it can be - even if you know you should be fine.

              I'm not saying that at home tests are a bad idea, but I do think that having a counselor deliver the results is a really good thing. No one wants to hear they are HIV positive. This isn't obesity - this is a deadly, heavily stigmatized disease. It's absolutely devastating. I'd hate to think of what it would be like to find something like this out without someone there to talk you down off the ledge. I wouldn't consider this an ethical argument though. I'd consider it best practices in medical care.

              I do think at-home testing can help prevent the spread of the disease, but I also think that it's probably not the best way for most people. It is a personal choice, although I would advise anyone to opt for a testing center instead.

                Reply#9 - Wed May 16, 2012 9:11 AM EDT

                That someone is TAKING the test is a good thing. They are showing concern for their own well being. I can see MANY people being able to afford $20 for this test vs how much to see a DR for a LAB test?

                I can also see someone INSISTING on a NEW or even infrequent partner taking a on the spot test... sure sure I'm fine... then why does the test say you aren't? OK so it takes the passion out of the moment. It beats the alternative.

                • 1 vote
                #9.1 - Wed May 16, 2012 11:53 AM EDT

                Oh, I totally agree that taking the test is a great thing. Everyone should get tested once a year whether they are worried or not.

                The only point that I was trying to make though is that I would worry about people finding out they are HIV positive without a counselor present. I would think that HIV-related suicides and other violence would increase.

                  #9.2 - Wed May 16, 2012 2:31 PM EDT
                  Reply

                  Isn't there an "INFECTION WAITING PERIOD" for HIV detection - 6+ months - between the act itself and the onset of HIV? Any instructions on the package?

                  Though a person who is infected with HIV will become infectious themselves very rapidly (within a day or so), they will normally have to wait a while before an HIV test will produce an accurate result. The length of time a person should wait before taking an HIV test will depend on the type of test they are taking.

                  In the vast majority of cases, the standard test that will be offered at an HIV testing centre will be an HIV antibody test. The HIV antibody test looks for antibodies to the virus in a person's blood. For most people these antibodies take 6 weeks to 3 months to develop. In very rare cases, it can take up to 6 months. It is extremely rare for a person to take any longer then 6 months to develop detectable antibodies.

                  Getting tested before 3 months have elapsed may result in an unclear test result, as an infected person may not yet have developed antibodies to HIV. These 3 months are known as the 'window period'. So it is best to wait for at least 3 months after the last time you were at risk before taking the test. Some test centres may recommend testing again at 6 months, just to be extra sure, though in most cases this is not necessary.

                  If you are waiting to take an HIV antibody test, it is vital that you do not put yourself at risk through further exposures to HIV during this time period. This means you should practise safe sex and not share needles. Any further exposure to HIV may mean a negative HIV test result is not accurate (unless of course you wait another three months after this exposure).

                  The vast majority of HIV tests that are given in clinics are antibody tests, though other types of test may be available in some clinics."

                    Reply#10 - Wed May 16, 2012 10:16 AM EDT

                    ABOVE: See the article at avert dot org slash hivtesting dot html

                      #10.1 - Wed May 16, 2012 10:22 AM EDT

                      Yes, there is absolutely a waiting period and they say to come back another 6 months after the test as well. That's something that HIV counselors are very clear about and I worry that would be ignored much like most other warning labels.

                        #10.2 - Wed May 16, 2012 2:33 PM EDT
                        Reply

                        Art, put the "PhD" to work get appraised of the technology. This is not a DNA test, and a toothbrush or cigarette butt can't be used to test for HIV (or this would be done already). It's an antibody test that needs a generous swab of "oral fluid" (and that is not saliva). No test is 100% accurate.

                        Your opinion has already been thoroughly vetted by the FDA advisory panel. You will simply be outvoted by the public, who wants the test, but FDA has yet to approve it. At the drugstore, who ever administers the test will be trained and required to do some initial counseling. It is a screening test, not a final test. The next step is to get the results confirmed by a laboratory method. Then, if confirmed positive, the real counseling begins.

                        We understand your opinion, but it's blowing in the wind, and lacks the scientific background to make it valid.

                        • 1 vote
                        Reply#11 - Tue Jun 26, 2012 1:45 PM EDT

                        I've been HIV+ going on 27 yrs and to look at me you would never know.Your judgement is causing people to not get tested.80% of the world AIDS cases are heterosexual.And as we speak the epicenter of hiv is in Africa.But they are already predicting the epicenter will move to China India and Russia in the next quarter of this century.I take one pill a day but one bottle of Medicine costs 1800 dollars a month (Atripla) I"m not guilty of doing anything anybody else was doing in the 80's.But I don't have sex with anyone because stopping it starts with me.I'm grateful to be in a country that has acess to medicine to treat it.Because only 5 percent of the world has acess to hiv meds.If you want to educate yourself go to the article The Future of AIDS and learn the facts.I'm 47 and look a lot younger than I am.If you don't protect yourself no one will.Worldwide AIDS is becoming a young person's disease.I came out to a women in the grocery store this morning and she said God has blessed you .I said she was right and I'm very grateful.Honesty could stop AIDS.

                        • 1 vote
                        Reply#12 - Tue Jul 3, 2012 2:18 PM EDT

                        This about one of the most stupidest articles I've read lately. His arguments suck. Seriously, someone stealing your toothbrush to test you.. Come on.. These test would be great. The counseling idea that it should be manditory is a crock. If there is a number or someone they can call then that is good enough. You can't make them take the counseling help. So damn stupid.

                        • 2 votes
                        Reply#13 - Tue Jul 3, 2012 2:27 PM EDT

                        I tested poz at a doctor. Trust me, that is not one result you want to hit you when you're all alone. I had support and I was a total mess for three days, a partial one for like a year. If you're not living in the Northeast where healthcare is available, you're totally f'd.

                          Reply#14 - Mon Jul 9, 2012 11:15 AM EDT

                          I find the argument that people are just too dumb to be allowed access to important information and effective tools is incredibly offensive.

                          The withholding of research tools and information is a tactic that allows certain people, doctors and government, to hold all of the power. The FDA, for instance, is rotten to the core, taking money from the very same pharma's that they are supposed to be policing, and using their governmental powers to harass and intimidate people who threaten big pharma money, while big pharma gens up crop after crop of new addictive drugs with FDA approval. Did you read the other article today, about how prescription drugs are the biggest drug addiction problem in the country? It's not a coincidence.

                          There is a shift in medicine, where people can order their own tests, and get their own information, without being held at gunpoint and shaken down for hundreds of dollars for the privilege. Doctors don't like this shift because it cuts into their profits. Government doesn't like this shift because there might be private medical information out there that they might not have access to, and patients out there that they have less control over. Those may be valid concerns, but there are ways to address them, such as the warnings required on packaging, and reporting requirements with medical testing agencies, and these concerns aren't sufficient to justify denying people the right to inquire into their health. We can read. We have brains. Put the information with the product.

                          There will always be fools and idiots. The existence of fools and idiots is not sufficient excuse to prevent people who aren't fools and idiots to go about their business. Fools and idiots cannot be legislated out of existence, and the people of this country should not have to give up their own rights in order to protect fools and idiots from themselves.

                          I am so blessed tired of government for the lowest common denominator.

                          • 1 vote
                          Reply#15 - Tue Jul 17, 2012 7:46 AM EDT

                          Women have been taking home pregnancy tests for years on our own. It may not be deadly, but it is certainly nerve-wracking, with results that can remain emotionally traumatic for years to come or even for life, and which many would argue should be accompanied by counselling -- advising women to get early prenatal care, etc. etc. Of course - a few decades ago, required government counselling would have included instructions to give your baby up for adoption, or rush out and find a man to marry. Think about the quality of counselling you might actually receive. Some people may be better off WITHOUT someone else's idea of what counselling you need.

                          The issue is control. Doctors and governments want to control our experience, our money and our information.

                          I don't like to be controlled.

                          Power to the People.

                          • 1 vote
                          Reply#16 - Tue Jul 17, 2012 7:54 AM EDT
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