Re: The gap between information and understanding

The amount of information in a 'personal genome' overwhelms our ability to interpret it (and can be expected to do so for some time). I think this 'understanding gap' creates some ethical pitfalls for those providing genomic information and for those using it.

What responsibility do test providers in conveying genomic information? In an ideal world genetic counsellors would help patients understand what their genomes might predict, but few people have the specialist training required. Even so, it is important to avoid  just sending anonymous computer-generated report that tells them they have an incurable genetic disorder. People don't generally handle probabilities very well, and may fear extreme but rare events more than things that are much more likley to affect them. When people are making life changing decisions based on genetic data who will be there to help them?

Knowledge changes over time, so it is worth considering whether information providers have a responsibility to update thier analysis (to correct mistaken predictions for example). It is certainly necessary to ensure that any genome information is in a portable format, so patients are not tied to one company for answers and can seek second/updated opinions.

How do we ensure information is 'fair and balanced'. Researchers often focus on defining genetic elements that confer increased risk of disease susceptibility far more than on decreased risk, so there is a real danger that this biases any personal genome report to be just a collection of bad news (the good news may not be recognized). Any links between data providers and those selling treatments also raise concerns about what information is highlighted.

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