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I am a south asian male living in the US.I tried to sign up as a donor.Here is my experience. >Your password needs to be between 8 and 15 characters long, must

I am a south asian male living in the US.I tried to sign up as a donor.Here is my experience. >Your password needs to be between 8 and 15 characters long, must contain at least 1 number and 1 letter and cannot contain spaces. Seriously WTF....I am sure half of the people who wanted to sign up did not just for this bs! Okay chill...password abcd...... > 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? Half of the people who passed stage 1 probably said "fuck it" at this stage.I am close but am willing to go through this for amit. > SSN? Driver License Number ? HomePhone ? Current Mailing Address? Permanent Address ? Employer Information ? Should I also give you my bank account username/passwords?At this point I am really mad!..Luckily the SSN and DL fields are not mandatory > First Contact Information ? Spouse Information ? Second Contact Information Grrr....what the fuck! > Race Information? Not Hispanic or Latino ? Black ? Asian ? Wtf...take my DNA and figure it out! After a cpl other irritating forms I am finally able to get a kit sent to my address. -My advice to Amit's friends would be to please do something to improve the signup workflow. -Also I have my genome phenotyped with 23andMe.I am totally willing to share it with Amit's Friends or Amit.I am sure a lot of other south asians on 23andMe would be willing too but there is no way to do this!

Tobu 15y ago
I'll plug pwdhash — https://pwdhash.com/ https://pwdhash.com/ — which will turn a password of six characters or more into a site-specific password that passes these requirements.
jeremymims 15y ago
- 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.
- mekoka 15y ago
  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"
  - AJ007 15y ago
    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.
    - marknutter 15y ago
      And yet, here we are.
    - mekoka 15y ago
      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.
pgambling 15y ago
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.
zasz 15y ago
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.
- cpher 15y ago
  Also, every time I buy something at a store, I have to give them my addresses. I hope you're kidding...
  - burgerbrain 15y ago
    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.
    - cdh 15y ago
      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.
    - gujk 15y ago
      Radioshack stopped doing that a while back.
      - burgerbrain 15y ago
        Ah, good to hear.
  - namidark 15y ago
    Thats when you give them the address: "123 Biteme Street" (pronounced Biteeem)... Or just tell them no
  - 15y ago
burgerbrain 15y ago
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?
waqf 15y ago
> (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.
jarek 15y ago
> (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.
- burgerbrain 15y ago
  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.
  - jarek 15y ago
    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.
    - burgerbrain 15y ago
      What do you recommend as an alternative screening requirement?
      - jarek 15y ago
        Hmm, I think "do you have unprotected sex with people you only know casually?" might be a start.
        burgerbrain 15y ago
        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?".
        15y ago
cpher 15y ago
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?
- blahedo 15y ago
  > 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.)
  - magicalist 15y ago
    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#United_States http://en.wikipedia.org/wiki/MSM_blood_donor_controversy#Uni...
  - rdl 15y ago
    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.
    - blahedo 15y ago
      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.
deleted 15y ago
[deleted]
- freemarketteddy 15y ago
  :)....By improving the signup workflow Amit and others who share the same plight will have a better chance at finding a donor....By taking 23andMe data from consenting 23andMe users this process will become so much better that potentially everyone will find a donor(not just famous people like Amit!) Yes I am that asshole and the world is forced to become better to accomodate assholes like me...:)...peace!
- homosaur 15y ago
  The guy did complete the registration. If he wants to complain about the design of the site and the fact that it's unclear why they want certain information, that's legitimate because it actually could be an impediment to people signing up, despite your disapproval. Is it appropriate on HN comments instead of actually sending an email to the guys who run the website? Probably not.
- comex 15y ago
  Chill out. Just because signing up is important doesn't justify the website going out of its way to make it obnoxious and hard to do so. The parent got a kit, others may not.
- leoedin 15y ago
  I can understand your reasoning, but you need to remember that the key to bone marrow donation is getting as many people as possible on the register. That means making it easy to sign up. The simpler the process, the better. Making a web form complicated, demanding, or asking for too much information is a mistake people make right across the internet all the time, and it's shown to cost them customers. I've definitely seen articles about how slightly tweaking the wording of forms increases sign ups by some percent. Why would giving bone marrow be any different? Criticism of the bone-marrow donor sign up process should be welcomed. The user stated that they did eventually get through the process, so your criticism of them is unfounded. Would the world really be better if people didn't criticise processes because they were somehow linked to charitable good? It's not petty and disgusting to criticise a flawed process, whatever it's for. If this was someone's startup and it had that kind of convoluted signup process, would anyone complain about criticism? No. Surely a process that could result in saved lives is more important to get right than someone's start up.
SeoxyS 15y ago
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.
pella 15y ago
>-Also I have my genome phenotyped with 23andMe. In the 23andMe there is a "Relative Finder" options. https://www.23andme.com/ancestry/relfinder/ https://www.23andme.com/ancestry/relfinder/ probably they can create a "Donor finder" options easily ..
johnx123-up 15y ago
Why his friends are searching match in US? Did they try his ancestral place?

Tobu 15y ago

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

jeremymims 15y ago

- 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.

mekoka 15y ago
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"
- AJ007 15y ago
  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.
  - marknutter 15y ago
    And yet, here we are.
  - mekoka 15y ago
    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.

pgambling 15y ago

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.

zasz 15y ago

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.

cpher 15y ago
Also, every time I buy something at a store, I have to give them my addresses. I hope you're kidding...
- burgerbrain 15y ago
  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.
  - cdh 15y ago
    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.
  - gujk 15y ago
    Radioshack stopped doing that a while back.
    - burgerbrain 15y ago
      Ah, good to hear.
- namidark 15y ago
  Thats when you give them the address: "123 Biteme Street" (pronounced Biteeem)... Or just tell them no
- 15y ago

burgerbrain 15y ago

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?

waqf 15y ago

> (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.

jarek 15y ago

> (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.

burgerbrain 15y ago
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.
- jarek 15y ago
  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.
  - burgerbrain 15y ago
    What do you recommend as an alternative screening requirement?
    - jarek 15y ago
      Hmm, I think "do you have unprotected sex with people you only know casually?" might be a start.
      - burgerbrain 15y ago
        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?".
        15y ago

cpher 15y ago

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?

blahedo 15y ago
> 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.)
- magicalist 15y ago
  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#United_States http://en.wikipedia.org/wiki/MSM_blood_donor_controversy#Uni...
- rdl 15y ago
  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.
  - blahedo 15y ago
    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.

deleted 15y ago

[deleted]

freemarketteddy 15y ago
:)....By improving the signup workflow Amit and others who share the same plight will have a better chance at finding a donor....By taking 23andMe data from consenting 23andMe users this process will become so much better that potentially everyone will find a donor(not just famous people like Amit!) Yes I am that asshole and the world is forced to become better to accomodate assholes like me...:)...peace!
homosaur 15y ago
The guy did complete the registration. If he wants to complain about the design of the site and the fact that it's unclear why they want certain information, that's legitimate because it actually could be an impediment to people signing up, despite your disapproval. Is it appropriate on HN comments instead of actually sending an email to the guys who run the website? Probably not.
comex 15y ago
Chill out. Just because signing up is important doesn't justify the website going out of its way to make it obnoxious and hard to do so. The parent got a kit, others may not.
leoedin 15y ago
I can understand your reasoning, but you need to remember that the key to bone marrow donation is getting as many people as possible on the register. That means making it easy to sign up. The simpler the process, the better. Making a web form complicated, demanding, or asking for too much information is a mistake people make right across the internet all the time, and it's shown to cost them customers. I've definitely seen articles about how slightly tweaking the wording of forms increases sign ups by some percent. Why would giving bone marrow be any different? Criticism of the bone-marrow donor sign up process should be welcomed. The user stated that they did eventually get through the process, so your criticism of them is unfounded. Would the world really be better if people didn't criticise processes because they were somehow linked to charitable good? It's not petty and disgusting to criticise a flawed process, whatever it's for. If this was someone's startup and it had that kind of convoluted signup process, would anyone complain about criticism? No. Surely a process that could result in saved lives is more important to get right than someone's start up.

SeoxyS 15y ago

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.

pella 15y ago

>-Also I have my genome phenotyped with 23andMe. In the 23andMe there is a "Relative Finder" options. https://www.23andme.com/ancestry/relfinder/ https://www.23andme.com/ancestry/relfinder/ probably they can create a "Donor finder" options easily ..

johnx123-up 15y ago

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