A Potential Ethics Problem With Massive Genomic Screening

It’s the metadata. Thankfully, I’m not a bioethicist (just a Mad Biologist), so I won’t have my concerns ruled out immediately. But when I read about proposals like this one to sequence everyone’s genome on the planet, I have concerns–which is not to say that I don’t appreciate or value the medical and scientific value of the proposal (now excuse me while I go buy some stocks).

But for this to work, we need good metadata–that is, accurately described medical and personal histories. Leaving aside the data integration issues (recording the metadata in a standardized format, etc.), there is a legitimate privacy issue. If, though when is probably the better preposition, data security is breached, this could be really awful for some people. While you might not really care if someone knows your real hair color, there are plenty of health conditions, people would like to keep private. Consider how few people knew that either David Bowie or Alan Rickman had cancer. What about someone who doesn’t want people to know he has been exposed to HIV?

Yes, there are concerns about people discovering interesting things about their families. But the other side of this is that people’s medical histories must remain private.

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5 Responses to A Potential Ethics Problem With Massive Genomic Screening

  1. David says:

    Your prospective employers could learn about your propensity for risk-taking behaviors, addiction, or other behavior traits yet-to-be identified.

  2. I don’t want my genome to be sequenced and I will never give permission. I suspect I’m not alone. Why do so many people just assume that everyone wants to know what genetic diseases they are passing on to their children and what ones might kill them?

  3. jrkrideu says:

    You, a 30 year old white male from Denmark, suddenly discover that the genome data base is under the impression that you are a 70 year old female Tongan. Oops just a little coding error, we’ll get right on it.

  4. RJ says:

    Careful, Mike, with your open-minded common sense and realization that an procedure can have things going for it and against it, you might confuse people.

  5. Tell me please, are there methods to estimate ethic and social risks? Maybe there are standards or researchs that deserve to be known in this issue.

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