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Big Three

Carwyn Hooper, a medical ethicist at the University of London, highlights three ethical issues at the Conversation that he says geneticists increasingly need to consider as whole-genome sequencing takes off.

Geneticists need to know how to deal with incidental findings and patient privacy. In these cases, Hooper suggests that withholding findings may be acceptable when there is uncertainty about the risks they pose and says that geneticists should largely avoid informing patients' relatives about disease risk, even if it is a clinically actionable variant.

But, whether people know about and then how they react to their genetic risk of disease also brings up the issue of responsibility, Hooper says.

Currently, if people develop a genetic disease, it's considered to just be bad luck. But, he says, if people know that they are at risk for certain diseases and take no steps to try to mitigate that risk, developing disease may no longer be a matter of luck, but responsibility.

This then, he adds, could lead to the reproductive responsibility of parents to undergo sequencing to determine their risk of passing on certain disease variants, and at-risk couples then undergoing pre-implantation genetic diagnosis. In this scenario, he says parents who decline test could pay a premium 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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