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Lending for health or borrowing trouble?

Jeff Trexler | Tuesday 7th July 2009

Is trying to help children always a good thing?

While the rest of the world was watching the Michael Jackson memorial, this afternoon on Twitter an interesting discussion occurred between global health expert Alanna Shaikh and Tori Tuncan, founder of the microloan service Lend4Health.

Although Lend4Health is a celebrated example of an organization that is using online social networks to promote social good, Shaikh confessed that the venture "gives me the creeps." Part of the problem, Shaikh noted, is the medical approach that Lend4Health currently supports: the controversial biomedical approach to autism, "quackery" that should not be a basis for a family's going into debt.

Another problem is more systemic: namely, the way that the microlending model infringes on the privacy of children.

It's a real issue. Lend4Health's website offers photos, names and diagnoses of the kids being served by the loans, and its Twitter account provides updates and detailed appeals. Even if parents are legally free to disclose otherwise private medical information regarding a minor child, Lend4Health raises what is--for me at least--an ethically questionable incentive for parents to make a child's condition public in exchange for cash.

Whatever one's assessment of biomedical intervention, surely the social enterprise community is not so caught up in its own virtue that it can't see how posting "my son Timmy is autistic and we can't afford to pay to get rid of his condition" can hurt the very children that lending for health is supposed to protect. A child's sense of self, relation to parents, interaction with friends--publishing medical information can have payback for the kid years after the loan itself is repaid.

While I admire Lend4Health's dedication to doing good, I am concerned about the potential ramifications for both children and adults should the model go to scale.

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Alanna Shaikh | Posted: 8 July 2009

One thing to consider is that the DAN! biomedical treatments being funded by these loans range from ridiculous (hyperbaric oxygen treatment) to ineffective (probiotics) to (possibly harmful (like chelation). Helping families go into debt so they can spend their money on ineffective treatments helps nobody.

If my child was sick I would move heaven and earth to get help for him, but these DAN! treatments are no help. They are distractions from good care.

Lavinia Weissman | Posted: 8 July 2009

We don't have an economic understanding or system in this country that has defined the right of every citizen to health. Health is much more than health care.

Most parents of severely health challenged kids also sacrifice a lifetime of income and potential savings and the ability to build equity. It comes with the territory also comparable to single parenting.

Our health care system is based on market based economic assumptions that are only 1/4 of what determines an economy.

The commercial insurance system and hospital domination of care have driven this and our public model is based on it. We end up cutting the purchase power of anyone using a public model, e.g. medicaid or medicare so they still can't get what they need.

If we determined a system for chronic illness of which 1/3 of the US population now deals with, it could not be market based.

Read: http://aboutworkecology.typepad.com
to learn more about my project relative to WECareMetrics of Health and join in.

Sheryl Mellor | Posted: 8 July 2009

What your saying is that, the child should suffer in silence. If the American system took care of their own, their would be no need for a group like lend4health. Instead parents are forced to air their problems in public trying for help. Do you honestly believe that this is somthing that parents go into lightly. I am not a resident of United States nor do I have a child with autism. If I did and this was a way to help my child you can bet your bottom dollar that I would be in contact with Ms. Tuncan for help. I heard about lend4health through a family member and I contribute what I can, Autism can devastate a family mentally as well as financially and you have no right to criticize what you have not suffered.

Sheryl Mellor

Jeff Trexler | Posted: 8 July 2009

The more we create a market in children's privacy, the greater the pressure will grow to regulate how parents & charities use that information. In fact, hospitals that use kids in fundraising PR run a serious risk of violating existing current HIPAA rules. One could even argue that parental consent in those circumstances is coerced & thus void, given the power imbalance in the relationship between parents & the institutional caregiver.

When posting medical information to raise health care money for kids becomes the norm, you can take the outrage felt by some commenters here and multiply it by millions. The likely result will not be mass acceptance but calls for gov't to force that info back into the private sphere. One probable mechanism: criminalizing the release of childrens' medical info on public websites.

If lending for health is to be a sustainable tactic, it can't pretend these issues don't exist. Addressing them is the best way to help everyone now & in the future.

Jeff Trexler | Posted: 8 July 2009

As for presuming that the kids would want their parents to put this info online, don't be so sure. If you think my posting a picture is problematic, think about what kids & adults in the children's social network could be saying both now and in the future. That isn't me saying autism is bad--it's a straightforward assessment of how people respond to identities publicly defined by difference.

A core part of the parent/child relationship is trust & safety--children want to have the feeling that family is a safe zone where potentially sensitive private info won't be exposed for public comment, let alone highlighted as the child's defining character trait. Social enterprise should work to preserve that relationship even as the movement strives to create a more effective social capital market; otherwise everything that critics say about SE being a corrosive market force is true.

Which brings me to how all of this relates to the law of privacy. . . .

Jeff Trexler | Posted: 8 July 2009

Contrary to what some appear to believe, I am attacking neither the parents nor the kids. To the contrary, I am trying to keep you both from being exposed to unfortunate consequences as a result of unfortunate circumstances.

For instance, nowhere did I state that parents are trying to profit off their kids' condition. Rather, I specifically stated that it is ethically questionable to induce people who need money to trade privacy for cash. In so doing, we create a situation where the privacy of children below the age of consent becomes a luxury good--those with money can afford to keep their kids' photos and medical details off the web, while folks w/out money feel that they must display this information in order to meet the childs' needs.

And this information is, contrary to what commenters' seem to believe, private. The government does not keep a public online list of people w/ autism--there is no way that I would have found out about anyone's condition w/out Lend4Health.

Deb Berman | Posted: 8 July 2009

Lisa, and other parents of children with special needs-

Thank you for participating in the conversation. Having worked with children with myriad special needs for years, those of us on the outside should do nothing short of admire your comittment, tenacity and drive to do what's best for your child. It's not easy being a parent, much less a parent of a child requiring specialiized care and attention. Thank you again for participating in the conversation.

Elaine Cohen | Posted: 8 July 2009

i believe, that in these unbelievebly tough times, incredible inequity in the distribution of wealth, and inadequacies all over the world in providing basic human rights related to healthcare for individuals, especially those not lucky enough to have been born into wealth, any legal method of gaining support to save lives and improve quality of life has to be legitimate. This is both my perspective as a mother and as an activist for social justice. I agree with the points raised that there are ethical questions to this approach and the need for careful administration of requests for funding, control and montioring of use of funds received, prior investigation of alternative healthcare routes, and verification of bona fide requests, perhaps even the nature of public disclosures. I certainly believe that, if i were in this position, i would want my parents to do everything they possibly could to help me. I would rather they fight for my health than my ego.

Desiree Gallaway | Posted: 8 July 2009

To reiterate what my aunt already stated, "It's not a secret and will not harm him in anyway for me to publicly tell others about his condition. We are not keeping it a secret from him, and its nothing to be ashamed of." You make it sound like being disabled is a horrible thing that must be hidden from the public.

I urge you to re-think some of these things,

Sincerely and respectfully,

Desiree.

Desiree Gallaway | Posted: 8 July 2009

As the older cousin of the child in the picture on your blog, I have to stand up in defense for him. I see my aunt continuously spend money on his treatment, and he has made leaps and bounds of progress. Perhaps if you would do a bit more research next time and form a more educated opinion on the matter, you would know this. You seem to have assumed the worse about these poor parents and child who are in desperate need of treatment, almost accusing them of spending the money on things other than what the money was intended for. Also, you might try putting yourself in the position that these people are in... remember, these are families that are trying to improve the lives of not only their children, but themselves as well so they may provide better health care for their special needs child.

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