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A cardinal principle that we must not stray from - no exceptions - is that your genetic information is your business in terms of who sees it. Nobody should be gaining access to that information without your explicit permission, and nobody should be requiring you to take a genetic test unless you decide that that's what you want to do.
Francis Collins
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Interpretation

What this quote means

Genetic information is personal and should only be shared with consent.

Francis Collins emphasizes the importance of personal autonomy over one's genetic information. He asserts that individuals should have control over who accesses their genetic data and should not be compelled to undergo genetic testing without their explicit consent, thus highlighting the ethical implications surrounding privacy in genetic research.

Themes

Genetic InformationPrivacyConsentEthicsAutonomy

In practice

Example use cases

When discussing new legislation on data privacy at a conference.

More from Francis Collins

All illnesses have some heredity contribution. It's been said that genetics loads the gun and environment pulls the trigger.
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I think history would say that medical research has, throughout many changes of parties, remained as one of the shining lights of bipartisan agreement, that people are concerned about health for themselves, for their families, for their constituents.
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I finished up my graduate degree in quantum mechanics, but underwent a bit of a personal crisis, recognizing that I didn't want to do that for the rest of my life. It was too abstract, too far removed from human concerns.
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The brain is the most complicated organ in the universe. We have learned a lot about other human organs. We know how the heart pumps and how the kidney does what it does. To a certain degree, we have read the letters of the human genome. But the brain has 100 billion neurons. Each one of those has about 10,000 connections.
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I believe God did intend, in giving us intelligence, to give us the opportunity to investigate and appreciate the wonders of His creation. He is not threatened by our scientific adventures.
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I took biology in high school and didn't like it at all. It was focused on memorization. ... I didn't appreciate that biology also had principles and logic ... [rather than dealing with a] messy thing called life. It just wasn't organized, and I wanted to stick with the nice pristine sciences of chemistry and physics, where everything made sense. I wish I had learned sooner that biology could be fun as well.
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