Amit Gupta Needs You, and Other South Asians Too (Join the Marrow Registry!) [en]

[fr] Amit Gupta, celui qui a démarré Jelly et Photojojo (entre autres), court le risque de mourir de leucémie aiguë s'il ne trouve pas un donneur de cellules souches du sang. La chance de trouver un donneur pour quelqu'un d'Asie du Sud est très faible -- c'est pourquoi l'entourage d'Amit (et tout internet s'y met) remue ciel et terre pour encourager un maximum de personnes du même groupe ethnique de s'enregistrer comme donneurs.

I should have blogged about this weeks ago. I’ve been anxiously watching the countdown of the time that was left to find a bone marrow donor for Amit Gupta.

I’ve been checking Facebook and Twitter in the hope that I would see good news announced.

The countdown now says 0.

Amit Gupta Needs You!

It doesn’t mean it’s too late, but it means that if there is no good enough donor amongst the people currently in the registry, Amit will have to take his chances with extra rounds of chemo (with possibly lasting damage) to survive the acute leukemia he was diagnosed with only mid-September.

If caucasians have a roughly 90% chance of finding a matching donor should they need one, chances are much slimmer if you’re South Asian (1 chance in 20’000 of finding an exact match). The reasons, it seems:

  • the huge variety of HLA profiles (a set of genes) amongst South Asians
  • a general reluctance to register and if matched, to donate (50% or more of South Asians back out once matched).

Heck, if the Ugly Indian can keep a street clean in Bangalore, can he not join a marrow registry and possibly save a life?

I have to say that when I first heard that Amit needed a marrow donation, I imagined the procedure was something like a spinal tap. It isn’t. The donor’s stem cells are usually taken from the blood stream directly, or if needed from the hip or pelvis, not the spine. All in all, the procedure is close to giving blood. Not a huge deal, to be honest.

Team Gupta’s next move, Clark tells, is to make sure people are aware of how simple and painless the donation process is. Marrow is extracted from the arm and generally takes six hours or so. The procedure is about as invasive as donating blood — it just takes longer.

And to join the registry, all you need to do is send back a cheek swab. It’s really easy.

Here’s how to help if you live in India.

Even if you’re not a match for Amit, you might be a match for somebody else whose life depends upon a bone marrow donation.

As for me, well, there’s little chance I may be a match for Amit (obviously). I looked up the Swiss Marrow Registry to sign up, and was quite disappointed to see that my heart operation seemed to rule me out. I checked with them, though, and it’s on a case-by-case basis. In my case, there’s happily no reason to rule me out on the basis of the operation I had over 30 years ago.

So, who is this Amit? I don’t really know him, though I had a couple of e-mail exchanges with him when I started the eclau Jelly. Yup, he’s behind that. And he also started Photojojo, which you should definitely join if you’re into photography.

But this goes beyond Amit: it’s an issue for the whole South Asian community. If you are South Asian, in India or elsewhere, please do see what you can do to help.

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MySpace Banning Sex Offenders: Online Predator Paranoia [en]

**Update:** If you’re a parent looking for advice, you’ll probably find [my next post]( more interesting.

[MySpace has removed profiles of 29’000 registered sex offenders]( from their site.

> In a statement, MySpace said: “We’re pleased that we’ve successfully identified and removed registered sex offenders from our site and hope that other social networking sites follow our lead.”

BBC News, MySpace bars 29,000 sex offenders, July 2007

Sounds like a good move, doesn’t it?

Maybe not so.

First, what is a sex offender? A sex offender is somebody on the state registry of people who have been convicted of sex crimes. A sex offender is not necessarily a pedophile. And in some states… a sex offender might not have done anything really offensive.

Listen to [Regina Lynn](, author of the popular [Wired column Sex Drive]( and the book [The Sexual Revolution 2.0](

> Lately I’ve been wondering if I’ll end up on the sex offender registry. Not because I have any intention of harming anyone, but because it has recently come to my attention that in a flurry of joie de vivre I might have broken a sex law.

> You see, I keep hearing these stories of mild infractions that led to listing on the sex-offender registry alongside child molesters, rapists and abusive spouses. There’s the girl who bared her ass out a bus window in college and pled guilty to indecent exposure — and then couldn’t become an elementary school teacher because of her sex offense. Then there’s the guy who peed on a bush in a park and was convicted of public lewdness, a sex offender because he couldn’t find a bathroom.

> […]

> But sometimes I do skirt the edge of the law when it comes to sex. And if you’ve ever ducked into the bushes for a little al fresco fondling, so have you.

> Unfortunately, even in California, it’s not technically legal to make discreet love in public spaces, even in your truck, even if it has a camper shell with dark windows and Liberator furniture, even if no one can see you without pressing his nose to the glass or hoisting her children up over her head.

> And if a passerby does intrude on your personal moment, it’s no longer a matter of “OK kids, pack it up and get out of here.” A witness’s cell-phone video could be on the internet within five minutes. A busybody might even feel justified in calling the police.

> “If someone saw something that offended them and they wanted to sign a citizen’s arrest, the officer is obliged to take the citizen’s arrest,” says Inspector Poelstra of the Sexual Offender Unit of the San Francisco Police Department, who spoke with me by phone.

Regina Lynn, Could You End Up on a Sex Offender Registry?, April 2007

[Critics of Megan’s Law](’s_Law#Criticism), which requires convicted sex offenders to register with the state, have also put forward that the registries include people it would be rather far-fetched to consider a threat to our children’s safety.

> But the laws have unexpected implications. Consider California, whose 1996 Megan’s Law requires creating a CD-ROM database of convicted sex offenders, available to the public. (The state has had a registry of sex offenders since 1944.) The Los Angeles Times reports that this new database is turning up many ancient cases of men arrested for consensual gay sex in public or semi-public places, some of them youthful experiments of men who went on to long married lives. One man, arrested in 1944 for touching the knee of another man in a parked car, was surprised when his wife collected the mail containing an envelope, stamped “sex crime” in red ink, telling him he needed to register as a sex offender. Many of these men are going through humiliating confrontations with long-forgotten aspects of their past, and complicated and expensive legal maneuverings to get themselves off the list. “It’s a real concern,” says Suzanne Goldberg of the Lambda Legal Defense Fund, which works on legal issues involving gays. “These laws have the potential to sweep in more people than they should. Laws requiring registration of people engaging in consensual sex are far beyond the pale. Those requirements can have devastating effects on people’s lives.”

Brian Doherty, Megan’s Flaws?, June 1997

These concerns about indiscriminate lumping together of “sex offenders” in the light of the online predator paranoia were already raised in January when MySpace handed over a database containing information about sex offenders to the National Centre for Missing and Exploited Children, on [Violet Blue::Open Source Sex]( and [Sex Drive Daily]( *(As an aside, I now find myself wondering if this post is going to get me blacklisted by internet security filters left and right… How ironic that would be.)*

> These are state registries, and depending on the state you’re in, you’re a “sex offender” under Megan’s Law if you get caught urinating in public, mooning, skinny dipping, or if you get busted having consensual sex in public. Think of how lopsided these charges must be in homophobic states. Also, it’s a lesson in what sites like MySpace can and will do with personal information. I’m definitely an advocate for speeding up natural selection when it comes to rapists and pedophiles, but I worry about what could happen to individuals and personal privacy when a questionably informed company casts a wide net, and turns it over to anyone who asks.

Violet Blue, MySpace and the Sex Offenders, Jan. 2007

In addition to that, we need to totally rethink the views we have on how sexual predators act online. The old pervert lurking in chatrooms is more a media construct and a product of [the culture of fear]( we live in than a reality our kids are likely to bump into, [as I said recently in an interview on BBC News]( “Watch the short video.”). Remember kids are way more likely to be abused by a person they know (family, friends) than by a random stranger. I’ll assume you don’t have the time to read through [the whole 34-page transcript]( of the [panel danah boyd participated in]( a few months ago, so here are the most significant excerpt about this issue (yes, I’m excerpting a lot in this post, but this is an important issue and I know people read better if they don’t need to click away). Here is what Dr. David Finkelhor, director of the Crimes against
Children Research Center and the codirector of the Family Research
Laboratory at the University of New Hampshire, has to say:

> Now, on the case of internet sex crimes against kids, I’m concerned
that we’re already off to a bad start here. The public and the
professional impression about what’s going on in these kinds of
crimes is not in sync with the reality, at least so far as we can
ascertain it on the basis of research that we’ve done. And this
research has really been based on some large national studies of
cases coming to the attention of law enforcement as well as to large
national surveys of youth.

> If you think about what the public impression is about this crime,
it’s really that we have these internet pedophiles who’ve moved
from the playground into your living room through the internet
connection, who are targeting young children by pretending to be
other children who are lying about their ages and their identities and
their motives, who are tricking kids into disclosing personal
information about themselves or harvesting that information from
blogs or websites or social networking sites. Then armed with this
information, these criminals stalk children. They abduct them.
They rape them, or even worse.

>But actually, the research in the cases that we’ve gleaned from
actual law enforcement files, for example, suggests a different
reality for these crimes. So first fact is that the predominant online
sex crime victims are not young children. They are teenagers.
There’s almost no victims in the sample that we collected from – a
representative sample of law enforcement cases that involved the
child under the age of 13.

> In the predominant sex crime scenario, doesn’t involve violence,
stranger molesters posing online as other children in order to set up
an abduction or assault. Only five percent of these cases actually
involved violence. Only three percent involved an abduction. It’s
also interesting that deception does not seem to be a major factor.
Only five percent of the offenders concealed the fact that they were
adults from their victims. Eighty percent were quite explicit about
their sexual intentions with the youth that they were communicating

> So these are not mostly violence sex crimes, but they are criminal
seductions that take advantage of teenage, common teenage
vulnerabilities. The offenders lure teens after weeks of
conversations with them, they play on teens’ desires for romance,
adventure, sexual information, understanding, and they lure them to
encounters that the teams know are sexual in nature with people who
are considerably older than themselves.

> So for example, Jenna – this is a pretty typical case – 13-year-old
girl from a divorced family, frequented sex-oriented chat rooms, had
the screen name “Evil Girl.” There she met a guy who, after a
number of conversations, admitted he was 45. He flattered her, gave
– sent her gifts, jewelry. They talked about intimate things. And
eventually, he drove across several states to meet her for sex on
several occasions in motel rooms. When he was arrested in her
company, she was reluctant to cooperate with the law enforcement

David Finkelhor, in panel Just The Facts About Online Youth Victimization: Researchers Present the Facts and Debunk Myths, May 2007

Let me summarize the important facts and figures from this excerpt and the next few pages. The numbers are based on a sample of law enforcement cases which Finkelhor et al. performed research upon:

– most victims of “online predators” are teenagers, not young children
– only 5% of cases involved violence
– only 3% involved abduction
– deception does not seem to be a major factor
– 5% of offenders concealed the fact they were adults from their victimes
– 80% of offenders were quite explicit about their sexual intentions
– these crimes are “criminal seductions”, sexual relationships between teenagers and older adults
– 73% of cases include multiple sexual encounters
– in half the cases, victims are described as being in love with the offender or feeling close friendship
– in a quarter of the cases, victims had actually ran away from home to be with the person they met online
– only 7% of arrests for statutory rape in 2000 were internet-initiated

I find these figures very sobering. Basically, our kids are more at risk offline than online. No reason to panic! About this last figure, listen to Dr. Michele Ybarra, president of Internet
Solutions for Kids:

> One victimization is
one too many. We watch the television, however, and it makes it
seem as if the internet is so unsafe that it’s impossible for young
people to engage on the internet without being victimized. Yet
based upon data compiled by Dr. Finkelhor’s group, of all the arrests
made in 2000 for statutory rape, it appears that seven percent were
internet initiated. So that means that the overwhelming majority are
still initiated offline.

Michele Ybarra, in panel Just The Facts About Online Youth Victimization: Researchers Present the Facts and Debunk Myths, May 2007

I digress a little, but all this shows us that we need to go way beyond “don’t give out personal information, don’t chat with strangers” to keep teenagers safe from the small (but real, yes) number of sexual predators online:

> Our research, actually looking at what puts kids at risk for receiving
the most serious kinds of sexual solicitation online, suggests that it’s
not giving out personal information that puts kid at risk. It’s not
having a blog or a personal website that does that either. What puts
kids in danger is being willing to talk about sex online with
strangers or having a pattern of multiple risky activities on the web
like going to sex sites and chat rooms, meeting lots of people there,
kind of behaving in what we call like an internet daredevil.

> We think that in order to address these crimes and prevent them,
we’re gonna have to take on a lot more awkward and complicated
topics that start with an acceptance of the fact that some teens are
curious about sex and are looking for romance and adventure and
take risks when they do that. We have to talk to them about their
decision making if they are doing things like that.

David Finkelhor, in panel Just The Facts About Online Youth Victimization: Researchers Present the Facts and Debunk Myths, May 2007

So, bottom line — what do I think? I think that MySpace’s announcement is more of a PR stunt than anything. This kind of action is the result of the ambient paranoia around sexual predators online, but it also fuels it. If MySpace are doing that, it must mean that we are right to be afraid, doesn’t it? I think it is a great pity that the media systematically jump on the fear-mongering bandwagon. We need more sane voices in the mainstream press.

Here is a collection of links related to this issue. Some I have mentioned in the body of the post, some I have not.

MySpace bars 29,000 sex offenders
Could You End Up on a Sex Offender Registry?
MySpace and the Sex Offenders
Megan’s Flaws?
Just The Facts About Online Youth Victimization: Researchers Present the Facts and Debunk Myths ([see danah’s post for YouTube video](
– [Video: BBC Interview (Teenagers, Facebook)](
– [Adolescents, MySpace, internet: citations de danah boyd et Henry Jenkins]( (quotes are in English)
– [De la “prévention internet”](

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