Release 0.9 : The Process of Informed Consent

The title alone may be enough to put you to sleep! but please read on: This post is a generalization of advice I'm giving to outfits in three areas: personal information as in personalized search or advertising cookies, space travel and medical information. And of course there are others...

You are probably familiar with the process of informed consent, especially on the web: You click a button, a small window opens, and a few lines of text are visible out of what may be nine or ten pages of text. You can page through it if you want, but it is nigh impossible to read, often all in upper-case text. Here's a sample.

In a typical consent-form scenario, the offering party's goal is to get the user to click yes, whereas the user's goal is to get on with it. But there's an opportunity to do something quite different.

Here's the approach I'd like to see. The sections in italics are my commentary.

Our service is not just something we give you; it's also something you have to do for yourself. Part of it is educational, and so before you buy we want to give you a free sample.

In fact, we want you to be an informed consumer. If you buy our service and feel disappointed or wronged, you will tell your friends and we will lose business. We don't want to sell to you unless you actually want what we offer. So rather than rush you through this, we want you to take the time to understand what we are offering.

And to make it fun even while we make sure our message is clear, we want you to take a quiz!

There are some right and wrong answers, but other questions are there simply to raise questions we want you to consider. And some questions are for us: We want to know your interest/opinions concerning certain services or activities we may want to undertake at some later date.

Marketers know that consumers rarely go to, say, a car site and buy a car. They go to a car site and explore. They come back again, visit other car sites, talk to friends....and then perhaps they buy a car. That's not necessarily the pattern when they give up personal data...but they do give up personal data over time, across many visits. And it certainly is likely to be the pattern for people getting their genomes sequenced or buying risky space travel.

Next comes a description of the service and questions. The questions may come within the description or at the end.

What is a cookie?

What kind of data do we store about you?

Where do we store the data?

What do we do with the data?

Who else gets to use the data?

Or for a health-care site:

What kind of information are we collecting?

What do we do with it?

How can it be useful to you? To other people with your condition?

Can the presence of certain genes predict a disease?

How will [a certain treatment] change your chances of recovery? If your risk of dying of X cancer is 2 percent, what would your risk be if your chances of dying of X cancer increased by 20 percent?
The answer is 2.4 percent, not 22 percent, just in case you were wondering! This is one of the commonest misunderstandings, and a dangerous one, because it makes people reject therapies that could be really useful.

Or a space tourism site:

What is the risk of dying in a space accident?
It's not insignificant, but it's probably not much worse than habitually driving drunk.

How does that compare to my risk of dying in an automobile, if I drive as much as the typical American? Of course, one is a one-time risk and the other is a lifetime risk.

What is the accident profile of the specific space craft I would be flying in? By the way, until the Personal Spaceflight Federation got the regulations changed, letting a foreigner know these details could be a breach of ITAR, the US military export regulations....

And for the future:

Okay, you get the picture. The copy would of course include the answers to all these questions.

And then there would be more:

Whom would you like to share your medical information with?

If you had a rare disease, would you be willing to share your genetic and health data anonymously with researchers looking for a cure?

If you had an unusual condition or genetic profile, would you want to be connected - directly or online with a pseudonym - with other people who shared that profile?

Would you like to have your surfing information shared with vendors who would offer you discounts based on your online activities?

Would you like to be able to see the data that the marketers see, and to remove information (for whatever reason)?

So, if you have something to sell that's hard to understand, give it a try!

This kind of quiz would be beneficial to everyone, I believe - especially if the marketers paid attention to the answers.

It would ensure that there were no nasty surprises.

In the case of space flight, it might actually attract a certain segment of risk-seeking customers, and might steer others to safer activities (such as flight training) that they would enjoy more. It would also dramatically reduce legal risk, since customers could not claim they were not informed of the dangers.

The same for health and even personal/marketing data collection. In each case, informed customers are better customers, since they will not become disappointed customers. The quiz could also guide vendors in deciding what services to offer.

Yes, it would deter some customers, and it would certainly slow down the buying process.

But I think it's just the next generation of marketing, in a world where many services are simply not comprehensible at first glance.

The remainder of the proof (= design) is left as an exercise for the reader.