Expectation setting about the risks of obtaining and sharing genetic information

Imagine being given the job of writing a manual that describes the risks associated with driving. All new drivers will be required to read this manual before they get behind the wheel.

The publisher wants a manual that is both comprehensive and concise. So, great care will need to be taken about the number of words dedicated to each risk. Spend too much time writing about flat tires, potentially more significant risks may get glossed over.

By the way, the year is 1908 and the Model-T is just beginning to roll off the assembly lines. Few people in the world actually own their own vehicles, but expectations are that many people will want to learn to drive even if its only recreational. They may even own vehicles themselves one day (heck, there might even be a system of interconnecting roads one day).


Model T


 

Foreseeing the potential mass appeal of vehicular transport, the publisher has requested that the manual take into account not only risks that exist today, but treatment should also be given to potential future risks that may arise.

The value of this manual will depend on how well the author is able to match the content with the driving situations readers are likely to face. Are they driving in the mountains of Coroico or in conditions similar to those I’m facing here in Boston, which look something like this:

dangerous roads
(Photo by Shuck)

 

The value of the manual will also depend on the drivers themselves: their experiences, their level of knowledge, their particular type of vehicle, and their expected behavior on the road. Are they risk-takers?

risky drivers
(photo by zerega)

 

Risks may even depend on an individual’s belief system:

amish drivers
(photo by cindy47452)

 

Setting reasonable expectations about risk
What is obvious to us now is that any manual produced in 1908 about the risks of driving very likely would be completely irrelevant today, except for those of us who find historical minutiae to be of great entertainment value.

Do you think this manual would have included “road rage” or the dangers of text messaging while driving? (BTW, in 1908, the Western Electric number 317 magneto wall phone did not even have an interface for dialing numbers, let alone text…calls required a voice-based interaction with an operator)

So, any manual developed today about the risks of obtaining and sharing a genome sequence will have a limited shelf-life. A few risks may come to be recognized more or less as “eternal truths” that go hand-in-hand with genome sequencing, while others are destined to become historical artifacts.

To get started with this meditation about risks, I’m going to state the obvious. Talking about the risks of obtaining and sharing genetic information is difficult to do in absolute terms for at least three reasons:

1) Risks are contextual
2) Risk-taking preferences vary widely
3) Many risks are poorly understood or are non-obvious

This month I am doing an extended meditation about the risks of obtaining and sharing personal genome sequences. This exercise will be cathartic for me. Beyond that, I hope it may help to reorient the conversation about risks into something that one day might resemble practical guidance for individuals considering obtaining and sharing personal genetic information.

Comments

3 Responses to “Expectation setting about the risks of obtaining and sharing genetic information”

  1. NA on December 10th, 2007 10:34 pm

    Quote: “So, any manual developed today about the risks of obtaining and sharing a genome sequence will have a limited shelf-life. A few risks may be recognized more or less as “eternal truths” that go hand-in-hand with genome sequencing, while others are destined to become historical artifacts.”

    Yes, the risks associated with disease risk will change over time. For instance, as we learn more about mutations that have clinical significance and insignificance, we will learn what patients are more likely to develop a disease and how medications will work with these specific mutations (synthesizing the drug).

  2. ignasi on December 11th, 2007 12:16 pm

    Great parallelism!

    @NA
    I can’t quite see your point. I think the “risks” refers more to the presence of existing such information out there… and how they might change to… ‘different’ (who knows if to worse or better along time).

  3. jasonbobe on December 11th, 2007 12:50 pm

    Yes thats right Ignasi, here I am talking about the risks of putting your genetic information out there into the world.

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