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- Much of the reason for the secondary contact information is to ensure that if you are a match they have multiple ways to find you.

- You may be a match for someone ten years down the line. Odds are that you won't be in exactly the same place with the exact same contact information.

- It costs about $100 to do the analysis on each test. Therefore, if you provide additional information that may in some ways be redundant, it will aid in screening for likely matches.

I would strongly suggest that they have the courtesy of stating their intention when asking for all that information. It's not difficult.

People are showing up to help and are then subjected to what seems like an interrogation. Even the most helpful soul would raise her eyebrows a few times.

I'm not saying that the information is irrelevant, but each question is there for a reason, why not just state what it is? You were able to do it in a couple of lines, why can't they do the same in the form.

"Disclaimer: Some of the secondary questions in this form might seem intrusive, but we need to make sure that if you're a match we have multiple ways of finding you.

Also, the analysis is lengthy and costly, we use the additional information to filter out samples that are more likely to match our current needs, which helps to speed up this process.

We are aware of the sensitivity of the information you're providing to us and we take your privacy and your confidence to heart. For the same reasons the password you're setting to access your file should be more stringent"

At risk of sounding like an asshole, donating your bone marrow is a pretty damn big deal. What use is a bone marrow "lead" if the person runs the other direction when asked for their SSN.

And yet, here we are.

People generally go in, not really believing that they will match. They think it only happens to others. Their attitude usually changes when this abstract possibility becomes a tangible reality.

Before taking the test: "Ah! I probably won't even be a match. Why bother?" After being matched: "Shit! Is this for real? A life now depends on ME?"

There's a similar phenomenon when a competitor starts winning and the possibility of him actually becoming champion materializes. Believers come out of the woodwork.

That's why the goal isn't to convince them to give bone marrow, but rather to just see if they match first.

For some reason, nobody complains when they have to fill out the paper equivalent of these web forms. I did, and happily indicated my race too, in a whole room full of people at my company, and nobody was complaining. I think that we're used to filling out much shorter forms on the web, so seeing a long form with a lot of fields there is disconcerting, but the quantity of information they're asking for is on par with most other paper forms I've filled out.

Also, we don't live in a world where DNA sequencing is free. Seems like common sense to fill out your race.

> Much of the reason for the secondary contact information is to ensure that if you are a match they have multiple ways to find you.

None of which helps if you would have been a match but instead dropped out of their signup process.

And if you were too much of a lazy douche to fill out a couple extra fields, they're supposed to believe you'd go through the actual effort of becoming a donor because...?

I'm sorry, you're under the impression people who think of helping this man are under obligation to do so.

Anything that makes more successful donations less likely is bad. Asking for invasive personal information without justifying it in such a way that people are comfortable giving it is BAD.

The fact the guy you're responding to points out something on a site with enough gravitas that is an impediment to the process isn't douchey, it's being helpful. He may be literally saving lives by getting people to improve the process to get more matches.

I'm sure getting everyone to walk to a hospital and pay their own way to take a sample would be a much more convenient way for the marrow matching service to work, however, I be far fewer people would do it.

Same principle with forms that ask for scary data. Not doing so, and doing things in user friendly ways may get one or two more people the marrow they desperately need.

It costs money to sequence DNA and calculate someone's ancestry. 23andMe loses money whenever it sells a kit. Are you seriously too lazy to save a nonprofit a few hundred bucks by spending 1 second to indicate your race?

Also, every time I buy something at a store, I have to give them my addresses. Including my phone number and a few extra ways to contact me in case I move, and you know, someone is dying and needs my help, sounds pretty reasonable.

Also, every time I buy something at a store, I have to give them my addresses.

I hope you're kidding...

Many stores ask for it. Radioshack I believe is a prime example of this. I've never heard of them hassling you if you refuse however.

RadioShack only asks for your zip code. It pops up and asks when ringing something up. They can just hit escape if you don't want to tell them.

Radioshack stopped doing that a while back.

Ah, good to hear.

Thats when you give them the address: "123 Biteme Street" (pronounced Biteeem)... Or just tell them no

I meant an online store. I was too angry when I was typing my comment.

Also, every time I buy something at a store, I have to give them my addresses

Every store I've been to has been perfectly happy with only a green piece of paper with the number "20" written all over it.

Also, every time I buy something at a store, I have to give them my addresses.

At which point you can simply say "no, I don't want to" and they'll still settle for your money.

If 23andMe loses money on kits, where are they making their money?

Advertising and upsell on the website features.

I used to work there. Fuck if I know. I think they were hoping to make money off the research, and they've moved to a subscription model by charging for new discoveries about your genome.

I meant an online store.

> (Men only) In the past 5 years have you had sex, even once with another male?

That's a very, very different question from "... have you had sex, even once, with another male?" which I think is what they meant to ask.

The sign up process was also a huge pain for me, but I mostly got through it. But the part that bugged me the most was how strongly they were trying to get me to donate money, too. I get that it takes $100 to process the application, but this feels like unpleasant upselling. If you're asking people to donate their bone marrow, which is a pretty big deal, don't try to make them pay for it, or make them feel bad if they chose not to.

Once you're signed up online, though, the registry is pretty painless. The cheek swabs were a lot more convenient than 23andme's massively annoying spit donation.

I really have a hard time seeing any of this stuff as out of line, particularly asking for your race. Much easier and cheaper to ask you than to figure it out themselves... if it's a privacy thing, why would you be ok with giving them your DNA, but not telling them your race?

I agree that the form is a bit long, but it didn't take me more than 5 minutes to complete. I got the swab kit a few days later, swabbing took less than a minute, and it was ready to mail. Six minutes of work to potentially save someone's life, just do it.

In the past 5 years have you taken money or drugs in exchange for sex?.. (Men only) In the past 5 years have you had sex, even once with another male?

In the U.S., if you donate blood you are always asked this question, so this is completely acceptable. Do you really want the donation pool potentially contaminated by the HIV virus?

> Do you really want the donation pool potentially contaminated by the HIV virus?

This is FUD. Gender of partner as an HIV risk factor is now much less predictive than a number of other risk factors that they do not check for; it is especially insulting to monogamous couples whose HIV risk is negligible. (The Red Cross is especially odious in this regard, as they are still asking this question not as "in the past 5 years", but iirc "since 1978", which is absurd.)

I agree with you that the policy is wrong, but it comes from the FDA, not individual organizations:

http://en.wikipedia.org/wiki/MSM_blood_donor_controversy#Uni...

If the goal is to reduce the risk of HIV (due to imperfect testing), if they're willing to ask offensive questions and discriminate, at least for blood, it is probably statistically valid to filter based on income/credit score, race, and zip code. I can only imagine how much uproar this would cause.

The question itself is not offensive, and the idea of the filtering is perfectly valid. The problem arises in that the level of risk being filtered by "sex with another man, ever" or even "sex with another man, last five years" is much less than other risk factors that are more common but not screened---but the presence of the question (and absence of others) has the effect of spreading FUD about the risk factors, and thus has the effect of spreading and reinforcing homophobia even if we generously assume that homophobia is not the reason for the rule in the first place.

Reducing the time limit and/or adding other factors to the screening would remove the objections of (most of) the people that complain about this rule.

No, this is not FUD. This is a proxy for a pattern of behavior (unprotected sex with the same sex, sharing of needles, etc). They ask you these questions as a primary filter for determining who is at risk of transferring a disease. We still don't know everything about how the disease is transferred, but we know which behavior patterns lead to it.

And regarding the 1978 date, we still don't even know how long HIV can lay dormant in humans.

Your grand-grandparent post quite emphatically is FUD. Being MSM is positively correlated with a pattern of behaviour that elevates risk of HIV. So is being a college student. So is serial monogamy. So is being a heterosexual male. Singling out one of these while making no attempt to break down the diverse group MSM by further detailing high-risk behaviour and black-marking it with an ominous question like "Do you really want the donation pool potentially contaminated by the HIV virus?" (who does?) is very much FUD against MSM as a whole.

MainStream Media?

http://en.wikipedia.org/wiki/MSM_blood_donor_controversy http://en.wikipedia.org/wiki/Men_who_have_sex_with_men

I'm sorry if reality offends anyone's PC sensibilities, but in the US MSM account for 49% of HIV cases[1] despite accounting for a small percentage of the population. MSM are MUCH more likely to get HIV than, say, frat boys who casually hook up with a lot of females. I'm not sure if the ban is completely justified, but there is potential reason behind it.

[1]http://www.cdc.gov/nchhstp/newsroom/docs/fastfacts-msm-final...

49% of HIV cases are MSM, not 49% of MSMs have HIV, don't twist it around. You are trying to make it sound much worse than it really is, when in fact it's a non-issue, thus spreading FUD. Very few MSMs have HIV.

That's what I said. Try reading my comment again.

49% of HIV cases = 580,000 cases. That's a staggeringly high infection rate in the MSM community in the United States - more than one in ten. The CDC estimates that one in five gay men have HIV in a study of 21 major cities, and that 40% of them don't know it.

The statistics do not offend my sensibilities. The FUD does.

There is a long way between "up to one in five MSMs are HIV-positive" to dismissing discussion on whether all MSMs should be banned from donations for life with "Do you really want the donation pool potentially contaminated by the HIV virus?"

>-Also I have my genome phenotyped with 23andMe.

In the 23andMe there is a "Relative Finder" options. https://www.23andme.com/ancestry/relfinder/

probably they can create a "Donor finder" options easily ..

Why his friends are searching match in US? Did they try his ancestral place?

> (Men only) In the past 5 years have you had sex, even once with another male?

If I was going through this process, I'd answer yes even if not true purely out of spite.

If you were going to do that, then why would you even bother with the form? You would just be wasting your time and theirs.

So that when they get a number of applicants they need but won't process or match due to policies straight out of 1991, someone maybe possibly finally gets a clue.

Of course, as a white male I'm about as boring ethnically as they come, so I realize my potential for making an impact is quite low.

What do you recommend as an alternative screening requirement?

Hmm, I think "do you have unprotected sex with people you only know casually?" might be a start.

Last time I gave blood, that was in fact one of the questions, more or less... iirc it asked about unprotected sex in general, though in a tighter time-frame.

Of course your particular wording is just opening a huge can of worms with "what does 'people you only know casually' mean?".

It can definitely be improved.

Well, I don't think anybody disagrees there.

I'll plug pwdhash — https://pwdhash.com/ — which will turn a password of six characters or more into a site-specific password that passes these requirements.