
My startup: Genetic testing for CCR5 delta 32 (HIV Resistance) - rms
http://www.hivgene.com
======
webwright
I think it's interesting and (if it were free) I'd want to know (even the me
10 years ago who wasn't married would).

But what problem does it solve? Why (besides curiosity) would I want that? Is
it for HIV positive people to who might be hoping for a slow progression? For
people who just want to feel a little more comfortable having lots of
unprotected sex?

I guess I can see the former... Though I would think that the audience is
relatively small (and hopefully getting smaller) and would be looking to their
doctor for stuff like this.

~~~
daniel-cussen
I could see you selling it to people who have been told they have AIDS, but
want to see if they are actually immune and don't need the expensive (around
20,000 a year, last I've heard) medicine.

~~~
rms
The market for that is _incredibly_ small. I have only seen one case of a CCR5
delta 32 homozygous individual with HIV in the scientific literature.
[http://www.sciencedirect.com/science?_ob=ArticleURL&_udi...](http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6T1B-45Y6RP9-H&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=65d83dbf8ba06d9a3b62902766559de4)

~~~
cstejerean
If I read that article right it says 1% not a single case (but then again I
didn't read too hard)

~~~
rms
1% of people are homozygous for the mutation. The study itself is of one
individual with the homozygous mutation that persistently had measurable viral
loads for HIV-1. Normally the homozygous CCR5 mutation means you don't get
HIV, because HIV infects through the CCR5 receptors which CCR5 D32 homozygous
positive individuals don't have. But you could get infected by a blood
transfusion from a late stage HIV patient, because HIV eventually starts
infecting via the CXCR4 receptor. You could also get infected via the less
transmitted and geographically confined HIV-2.

But these scenarios are unlikely to happen, so they haven't happened very
often. The study was notable because they found ONE GUY who couldn't fight off
HIV with CCR5 delta 32 homozyous.

If we could magically take away the CCR5 receptors from HIV+ individuals, many
would be able to fight HIV to the point where they tested negative on some HIV
tests.

See this old thread for discussion of Josh's curing HIV idea.
<http://news.ycombinator.com/item?id=47751>

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rms
Thanks news.yc. What do you think?

This is our first site to be selling tests, we've got something of a business
plan involving marketing different genetic tests to different audiences: men,
women, b2b, etc. Send me an email if you'd like to see one of our other,
flashier sites that isn't quite ready for launch.

~~~
mynameishere
* target audiences *

Craigslist m4m?

~~~
motoko
Despite your crudeness... that's actually not a bad idea...

~~~
mynameishere
I'm almost certain that that's what he meant (or something close to it). If
not, then he hasn't looked into the relevant statistics, or doesn't understand
marketing.

EDIT: Well, I guess he has looked in the relevant statistics.

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sspencer
Is there any guarantee of confidentiality? I looked in the FAQ and saw
nothing. This seems like a very sensitive test; I would not submit anything to
someone who did not _absolutely guarantee_ confidentiality. Even then, I would
be a little wary of doing something like this over the web.

~~~
rms
Yes, privacy is of paramount importance. We would only disclose information if
we were legally compelled to do so. I will add this to the FAQ.

~~~
icky
Possible privacy hole:

What's to prevent someone from acquiring a sample of someone else's DNA and
sending it off for you to test?

~~~
rms
It's physically impractical to buccal swab someone without their consent.

~~~
icky
Ah, that's more like it. :-)

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timr
1) What's to prevent someone else from selling a test for the same thing?
Surely, you're not the first to consider a test for this mutation, right?

2) Also, I think you're going to have to be _very_ careful with your copy.
You're selling an unapproved genetic test, for which the only real purpose is
to give people confidence that they can't be infected by HIV (don't split
hairs -- this is how 99% of the population is going to view your service). The
medical establishment is going to denounce you without a second thought, and I
wouldn't be surprised if an enterprising lawyer tries to make a case against
you for encouraging unsafe sex.

3) What are your error rates?

4) Your email input box is overlapping with your bullets under firefox 2 for
mac.

~~~
ingenium
1\. There is little to nothing preventing competitors, though I would be
surprised if anyone can compete with us on price.

2\. I agree. A startup is inherently risky and we are taking every precaution
we can.

3\. Error rates are effectively 0% as far as the technique goes. The only
possibility of error is human error in handling. Our testing procedures are
specifically designed to minimize the risk of human error. Furthermore, due to
the nature of the testing procedure, any possible errors would result in false
negatives, not false positives. In addition, we have a policy of retesting all
positive results.

4\. Noted, thanks... it does the same thing in Safari also.

~~~
timr
I'm suspicious of your claims in 3. What method are you using? Certainly not
RFLP, right? Are you sequencing the gene? A labeled oligonucleotide, targeted
toward the deletion?

I'm having a hard time conceiving of a method with _zero_ error rate (either
type I or II).

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davidw
+1 It certainly beats that other junk you were trying to push:-)

~~~
edw519
You mean the memory stuff?...I forgot what it's called.

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sungam
Leaving aside the doubtful utility of this test you really must provide some
information about who is behind this company, what techniques will you use to
perform the test? What expertise do you have in molecular diagnostics? How do
potential customers know that you are not simply taking the money and sending
out random results?

~~~
ingenium
We've discussed putting how we do the test on the site, but concluded that we
were best off not disclosing that information, seeing as no other genetic
testing companies explain the techniques they use to do the testing. I guess
you could call it a trade secret, even though anyone with experience in the
field could figure it out pretty easily.

As for expertise in molecular diagnostics, I've been doing research at a
hospital for a couple years now designing and developing tests such as this.
Furthermore, most of these techniques are now taught in undergraduate level
molecular biology labs.

For the last question, I suppose the same can be said for any company doing
genetic testing. It would be unethical to simply take money and send out
random results, though this could be a valid concern to some people. Do you
have any suggestions on how we can prove the legitimacy of the results?

~~~
greendestiny
Disclosing who you are, qualifications and relevant experience would be good I
think. If you don't feel comfortable putting them up then you'd have to
understand customers might not feel comfortable using your service.

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pius
This is a great idea. I think that you should work on the presentation of the
site, though. In the Web 2.0 world it's considered stylish or at least
excusable to have a very barebones site, but the average person needs a more
reassuring presence in order to trust someone with sensitive medical
information.

~~~
motoko
This is something that we've discussed.

Actually, we've left the site looking "barebones" as an explicit design
decision. People can be put-off by something "too slick," especially when you
position yourself as a simple, single-product company, and especially in the
research/academic world.

But you are right, too.

We are working on other brands with more premium product which we will release
soon. The designs of these sites will reflect the more premium brand.

Email rms for more information if you're interested, he's our news.yc baron.

~~~
dcurtis
Barebones is nice, but it looks like a spam site or a template of some sort.
It actually reduces customer confidence in that case.

Are you trying to follow the 23andme model, but only testing for a single
gene?

~~~
motoko
Hey, I absolutely agree with you. I also think that McDonald's tastes like
puke, but they run one hell of a franchise business.

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apathy
Fix the "Huntingdon's disease" typo, for heaven's sake. You're asking people
to view your company as an authority on the topic. Typos detract from that
credibility.

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nextmoveone
You should use Authorize.net to process your payments...so your customer can
stay on your site...I wouldnt like having to go to google to pay if I was
going to buy.

~~~
rms
I agree, it's on our to-do list. Though Google's $.20 + 2% - adwords discount
is anticompetitively good.

~~~
kirubakaran
+1 for 'anticompetitively good' :)

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rms
Old discussion on CCR5: <http://news.ycombinator.com/item?id=47751>

Includes Josh's idea for curing HIV

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omgz3rgrush
This site doesn't look trustworthy at all. Sorry..but for all I know you guys
are just making up the results. Without more information on who you are, or
how you do the testing, or some sort of certification from a trusted source, I
wouldn't use this service because I don't know if the testing is accurate.

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daniel-cussen
Is it possible to be diagnosed with HIV, not know you have CCR5, and
mistakenly purchase the medicine?

~~~
rms
Very, very unlikely. And you would still want to see a doctor and have your
viral loads regularly checked.

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gojomo
Does 23andMe or anyone else in the space bundle testing for this gene in their
larger/more-expensive packages?

~~~
rms
No, 23andMe only tests for SNPs (Single Nucleotide Polymorphisms) and this is
a 32 base pair deletion.

~~~
apathy
I forgot to include explicitly in my anti-23andMe rant that deletions, repeat
polymorphisms, and the like were not included in their product's results.
Thanks for reminding me :-)

