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Which ethics must we consider against a genetic risk?

As whole-genome sequencing is taking off, Geneticists will have to deal with three ethical issues highlighted at The Conversation by Carwyn Hooper, a medical ethicist at the University of London.

Incidental findings, confidentiality and responsibility increasingly need to be considered because the widespread use of whole-genome sequencing will lead to a substantial increase in the prevalence of unexpected results that are unrelated to the reason for a test, but which may be clinically relevant.

When there is uncertainty about the risks that an incidental finding could have, Hooper suggests it would be acceptable to avoid informing patients about the risk of a disease, even if it is a clinically actionable variant.

How people react when they know their genetic risk brings up the issue of responsibility, Hooper says.

Developing a genetic disease it is usually considered a matter of bad luck. Hooper says that people who know they are at risk for a genetic disease and don't try to change what is on their hands in order to mitigate that risk, it won't be a matter of luck developing a disease, it will be responsibility.

In favor of a reproductive responsibility, this could lead parents to undergo sequencing to determine the risk of passing on certain disease variants, and if this is the case, undergo pre-implantation genetic diagnosis. Hooper adds that parents who decline test could be responsible if their child develops a genetic disease.

"Like with all technology there are potential risks as well as benefits," Hooper says. "On the up side we may be able to significantly reduce the negative impact that genes have on our health. On the down side we may be one step closer to realizing the kind of dystopia encountered in Niccol's Gattaca and Huxley's Brave New World."


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