

Ask HN: Confronted ethical dilemmas while developing a health community - persilj

Have you worked in or for a company that developes web-based health communities and confronted ethical dilemma there? I mean, health communities like patientslike.com offer great opportunities for programmers, database designers and owners of the company (user submitted data can be sold), but health as a concept isn't very strictly defined -- how could it be?<p>It is quite easy to take some condition (one database table: "condition"), associate some drugs to it (another db-table) and let users tell that they have certain condition and that they have tried this and that drug for the it (few more db-tables). Ofcourse it would be nice, if users could somehow tell that they have some (preprogrammed) symptoms like "brain fog" (another db-table). Add something more that users can select and soon there will be enough information for automatically generated stats.<p>For example: http://www.patientslikeme.com/symptoms/show/189
(I'm not implying anything the referred site. I'm just using it as an example.)<p>Researchers and drug manufactures might find the stats useful in some way (by seeing some kind of patterns that other maybe can't) and the others could atleast satisfy their curiosity related to questions like "what are the top 5 in..".<p>However, from the user's point of view (potential or actual condition/symptom carrier) certain issue might arise: he thinks that he has found "soulmates" (in larger health communities "with blogs and everything"), but even when their symptoms match, they might have nothing in common at the neural level, for example. Actually, both of their conditions could be caused by different enviromental issues, but user couldn't let the System know, what kind of environmental issues might be involved -- and that's why the user keeps trying different kind of medications that other "soulmates" have tried (might take 10 years to go through all of them).<p>Think about Asperger's (aspies, like they might say). They seem to have something in common, but that might because the definition of the symptoms and their naming is too vague. Same goes for the criteria of many conditions. That would understandable in some sense as we as humans prefer to use common words like "socially handicapped" (instead of something more cryptic).<p>At this point you should be able to see what I might mean. This question was targeted to those, who has been involved in companies developing web-based health communities, but others too might have an opinion or two.
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shane-armstrong
Why could the user not let the system know what environmental issues were
involved?

Provide users with an input field with an optional brief description. Not only
will this allow them to help clarify what you require, but it will also help
to match them up with grammar, mentality, style of speech etc.

If executed correctly it could even become the de-facto standard by which
users measure their conditions against others and the first step to having
develop the links you want.

~~~
persilj
Yes, more input fields could be added, but it might be decided that, for some
obscure reason, they won't be. What might the company's interface designer
having friend, who has tendency to become seemingly depressed at times, think
at that point?

Other interesting questions include, but are not limited to the following. How
was the decision explained to the employees? What kind of opinion did medical
advisor for the company have?

