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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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Amanda Zarle | Posted: 17 July 2009

http://www.SmallCanBeBig.org is one nice example of keeping the stories personal yet anonymous.

Lisa Ludwig | Posted: 8 July 2009

@Jeff live a DAY, WEEK MONTH in my shoes then we can talk more. You have a whole lot to say for somewho has NO experience in this area of autism.

Tori Tuncan | Posted: 8 July 2009

[...] I also think it's important to note that, although the fact that these kids have autism is obviously pointed out and oftentimes their diagnosis stories are talked about extensively, the parents in most cases do write lots of other information about how great their kids are, how cute or funny or intelligent they are. They are kids first and their diagnoses are just a part of their being. So when you say, "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," I really don't think that is happening on Lend4Health.

Tori

Tori Tuncan | Posted: 8 July 2009

[...] As for disparity in power, I am not seeing that on Lend4Health. There is not an "us" vs "them" or a "rich" vs "poor" or a "have" vs "have not" dynamic happening on Lend4Health. The families posting there are not necessarily "poor" and the lenders are not necessarily "rich." The families can afford these treatments -- they are paying the loans back in full -- but they might not have the full amount up-front and out-of-pocket by themselves at that moment in time, so with Lend4Health they can collect the up-front cost and get the early intervention result, and then pay it back over time, interest-free. If you needed a $2,000 procedure tomorrow, you might not have it in your checking account, but that doesn't mean you are "poor" or "powerless." You just need some help today.

So instead of a family saving up the money over 12 months and then pursuing treatment (losing 12 months of potential health progress), they get the money now and pay it off over 12 months.

[...]

Tori Tuncan | Posted: 8 July 2009

Jeff: I do appreciate your thoughts on this, and as the person running the Lend4Health site, I am the one who has to figure our the most prudent course to take from day to day. I hope that the options I have given families (photos, location, & names all up to the family to choose/decide) helps different families choose the level of privacy that they feel is comfortable and appropriate for them. And as the person running the site, my question is, where does the site's responsibility end and the parent's begin? It's an important question in this new era, and I wonder if Facebook, Twitter, Kiva, etc have come up with a solution for this sort of thing.

I also want to share an observation about some of the older kids on Lend4Health. I know in at least 2 situations they have been involved in their posts. In one case, the boy himself chose the pictures he wanted to use, and in the other case, the girl was embarrassed by what her mom had wrote, so she provided new text. [...cont...]

Jeff Trexler | Posted: 8 July 2009

@Lisa Actions can have consequences far beyond our good intent. Making a public display of a child's condition can have consequences for that child for years to come. If you don't think that's a concern, that is your decision.

Jeff Trexler | Posted: 8 July 2009

@Tori Again, some would say that's raising awareness by exploiting kids who literally, under law, do not have the capacity to consent.

The Internet has obviously shifted boundaries of public and private, but not as much as people think. As I said in a comment that for some reason had trouble posting this morning, a core part of the parent/child relationship is trust and safety. Children want to have the feeling that family is a safe zone where potentially sensitive private info won%u2019t be exposed for public comment, let alone highlighted as the child%u2019s 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.

Lisa Ludwig | Posted: 8 July 2009

Jeff,
I have to say after reading ur comments what I came away with is that my child should suffer in silence. Because according to your " privacy' laws for pictures &information I wouldn't be able to let anyone online know about much of anything. So why would they want to help my child if they know nothing about them?

Also you stated that nowhere did you state that the parents were trying to profit from their childs condition. When in fact I took the direct quote from your blog, you stated "an ethically questionable incentive for parents to make a child's condition public in exchange for cash". I'm sorry if you think that statement is not leading but as several others have already said THAT IS what it sounds like.

I won't comment anymore as I am tired of having to defend why I am doing something for my child that I KNOW works. I have experienced people like Alinna far to often on blog sites and your article does NOTHING but fuel her flames of ignorance towards parents like me.

Tori Tuncan | Posted: 8 July 2009

Jeff: I will throw in the idea, though, that part of what I see happening on Lend4Health is not just the administrative aspect of a family getting money, but additionally, we have (1) a body of knowledge and the "anecdotes" of these treatments, but also (2) a kind of in-your-face awareness campaign that autism (or other health issues) are real. These are real people, real kids, that might live in your town. To restrict access, while it would be good in terms of privacy protection, it would limit the "looky loos" who actually LEARN something just by being there.

I'm really appreciating the discussion...it is helpful.

Tori

Jeff Trexler | Posted: 8 July 2009

@Tori That hospital illustrates the problem I mentioned below: the disparity in power. The family in Mongolia may have felt that they didn't have a choice, as might anyone receiving pro bono care.